ORIGINAL ARTICLE
Barriers to breast cancer screening in Australia: experiences of women with physical disabilities Kath Peters and Antoinette Cotton
Aims and objectives. To explore the experiences of breast cancer screening for women with physical disabilities. Background. Despite women with disabilities having the same or greater risk of having breast cancer than women without disabilities, they are less likely to uptake breast cancer screening services. Design. Qualitative descriptive study. Methods. Twelve women with physical disabilities were recruited for the purpose of this study. Data were collected via semi-structured face to face or telephone interviews. Interviews were transcribed and data were analysed thematically. Results. Overwhelmingly, participants conveyed that their breast screening experiences were negative. The following four themes describe the experiences of breast cancer screening for women with physical disabilities: feeling I’m not in control; being ignored and not listened to; being helpless, alone and afraid and; experiencing pain, torture and humiliation. Conclusions. Women with physical disabilities experience substantial barriers to breast cancer screening. This research highlights that the attitudes and poor communication skills of health professionals served as a deterrent to future screening for participants. Relevance to clinical practice. By exploring experiences of women with physical disabilities of breast cancer screening, nurses and other health-care professionals can use this to develop and implement optimal approaches, such as collaborative models of care which empower women with disabilities.
What does this paper contribute to the wider global clinical community?
• This paper highlights the consid-
•
erable difficulties that women with physical disabilities encounter with breast cancer screening which serve as barriers to future screening. This paper uncovers the need to urgently address health professionals’ current knowledge, attitudes and practices for breast cancer screening for women with disabilities, and develop collaborative models of care that empower them.
Key words: breast cancer, disability, inequalities in health, primary care, qualitative study, reproductive health, screening, women’s health Accepted for publication: 12 August 2014
Globally, breast cancer is the most common cancer among women, and is the major cause of women’s cancer related deaths, with an estimated 508,000 women dying of this disease in 2011 (World Health Organisation [WHO] 2013). In
2010, breast cancer had one of the highest mortality rates for Australian women from cancer; second only to lung cancer (Cancer Australia 2014). Breast cancer screening (BCS) measures include mammography, ultrasound, self-breast examination (SBE) and clinical breast examination (CBE). Such screening is
Authors: Kath Peters, PhD, RN, BN, Associate Professor, School of Nursing & Midwifery, University of Western Sydney, penrith; Antoinette Cotton, PhD, RN, Lecturer, School of Nursing & Midwifery, University of Western Sydney, Penrith, NSW, Australia
Correspondence: Kath Peters, Associate Professor, School of Nursing & Midwifery, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia. Telephone: +61 2 46203567. E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 563–572, doi: 10.1111/jocn.12696
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provided by a multidisciplinary team including doctors, nurses and radiographers (Leung et al. 2014). Not all women who access BCS have care delivered by nurses. However, the National Accreditation Standards for BreastScreen Australia now require that women with disability have access to a nurse and have their individual needs met to support BCS (Australian Government Department of Health 2014). Breast cancer screening and early intervention for breast cancer has been shown to reduce morbidity and mortality and improve health outcomes for women (Australian Institute of Health and Welfare [AIHW] 2013a, b, 2014). Since 1991, Australia has had a comprehensive population-based, national-free mammography screening programme for the early detection of breast cancer for asymptomatic women, now known as BreastScreen Australia. As women aged 50 years and over are at greatest risk of developing breast cancer, the programme has targeted breast cancer screening for women aged 50–69 years, and in 2011–2012, 55% of women in this age group had a mammogram through BreastScreen Australia (AIHW 2013a, b). The Australian Government 2013–2014 Federal Budget commitment of $557 million over four years has allowed BreastScreen Australia’s targeted age group to be extended to women in Australia, aged 50–74 years (Australian Government Department of Health 2014). According to WHO (2013), 15% (over a billion people) of people in the world have a disability, with the prevalence of ageing and chronic illness contributing to rising rates of disability across the globe. For this study, we defined disability according to the International Classification of Functioning, Disability and Health (ICF) and acknowledge that ‘it is the interaction between individuals with a health condition (e.g. cerebral palsy, Down syndrome and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports) (World Health Organisation 2013). In 2009, 185% of Australians, (approximately four million people) and 52% of people in Australia aged 60 years and over had a disability, with 29% (634,600 people) of the Australian population having severe disabilities requiring assistance with mobility, communication or every day activities (Australian Bureau of Statistics [ABS] 2011a, b). In 2008, Australia became a party to The Convention on the Rights of Persons with Disabilities (CRPD) (United Nations 2006) which mandates that: States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall
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take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
a. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes. (CRPD, Article 25)
Women with disabilities, particularly those with complex physical or mobility impairments are less likely to have BCS than women without disabilities (Armour et al. 2009). Despite women with disabilities having the same or increased probability of having breast cancer (Mele et al. 2005, McCarthy et al. 2006), they are often effectively excluded from appropriate screening by substantial barriers, including those which structurally and systematically discriminate and exclude them from their human rights to adequate primary care and preventative health services (Yankaskas et al. 2010, Andresen et al. 2013).
Literature review/background to the study One of the challenges that face health-care professionals is providing accessible, adequate and appropriate preventive BCS services to women with disabilities. BCS services are often not readily available, offered or made accessible to women with disabilities (Angus et al. 2012). Where these services are available, physical, economic, social and cultural barriers may prevent or inhibit women with disabilities accessing or using them (Yankaskas et al. 2010, Angus et al. 2012, Andresen et al. 2013). Women with disabilities tend to have higher rates of poverty and lower levels of education and employment and are less likely to be covered by private health insurance than women without disabilities, which impedes their access to BCS programs, particularly in countries such as the USA (Wollin & Elder 2003, Mele et al. 2005, Chevarley et al. 2006, Liu & Clark 2008). While Australia has free BCS for women aged 50–74, the costs of transport, parking and assistance may be a considerable disincentive for women with disabilities to access preventative health care services (Jan et al. 2012). Physical barriers to breast cancer screening include: lack of access to adequate parking, transport, buildings, rooms, assistance, equipment and procedures needed to undertake breast screening (Armour et al. 2009, Poulos et al. 2011, Mudrick et al. 2012). Women with physical disabilities are more likely to experience considerable pain and discomfort
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during mammograms (Caban et al. 2011, Poulos et al. 2011) which may deter them from future BCS. Poulos et al. (2011) conducted an observational study of 13 Australian women with physical disabilities undergoing a mammogram. Of the nine participants who were wheelchair bound, five were unable to keep the required position for successful mammography as they were unable to stand or sit erect and lean into the machine. Eight out of the 13 participants did manage to have successful diagnostic images taken, but four of these women reported that they would not return for future screenings due to undesirable levels of physical handling, anxiety, pain, discomfort and diminished dignity they experienced during the procedure. Poulos et al. (2011) concluded that doctors and screening services personnel need to adequately assess women for prediction of mammography success and make available appropriate alternatives such as CBE and breast ultrasound to women who are not candidates for successful mammography. Of major concern are social barriers which rule out access to BCS for women with disabilities at the outset, such as attitudes and behaviours of healthcare professionals who may not recommend or offer BCS for women with disabilities (Yankaskas et al. 2010). Social stereotyping and inaccurate perceptions of women with disabilities by health professionals may lead them to view the women as genderless and asexual and hence not in need of BCS (Armour et al. 2009). Physicians’ feelings of discomfort have been associated with lack of providing or offering adequate BCS to women with disabilities (Verger et al. 2005). Buckley et al. (2012) found that clinicians believed that patients with severe and moderate disability may have limitations that might preclude or impede cancer screening. The clinical relationships between health care providers and women with disabilities, along with health care providers’ lack of knowledge, education and training have been identified as major barriers to women with disabilities accessing and using breast screening services. Mele et al. (2005) conducted a phenomenological study with 20 women, aged 21–65 years, with motor or sensory disabilities and their experiences with breast cancer screening. Negative experiences related by the women in the study included health care professionals: ignoring and failing to advocate for their nondisability health and preventive needs, spending insufficient time with them, and showing their lack of knowledge and discomfort with their disability, failing to provide adequate and appropriate information and communicating poorly with them. Liu and Clark (2008) found that the quality of BCS experience was significantly related to the likelihood of routine BCS, with privacy and respect contributing to enhanced quality of the experi© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 563–572
Barriers to breast cancer screening
ence. In a study by Clark et al. (2009), the majority of unmarried women with and without disabilities reported positive experiences of mammography. Nonetheless, women with disabilities were less likely to return for future mammograms than women without disabilities, whose repeat screenings increased from 59–86% following positive experience of mammography. While there has been extensive research into breast cancer screening for women in the general population, little research has been undertaken in regards to BCS in women with physical disabilities. There is a need, therefore, to explore the BCS experiences of women with disabilities so as to give voice to their experiences, issues and concerns, and to inform health care professionals in the knowledge, attitudes and practices needed to improve the experience, access, and uptake rates, of BCS for women with disabilities.
Aim of the study The aim of this study is to explore the experiences of women with disabilities of breast cancer screening (BCS).
Methods Design This paper stems from a larger concurrent mixed methods study that aimed to explore the barriers and facilitators to breast and cervical cancer screening for women with physical disability. This paper presents a component of the study which used a qualitative descriptive design to explore the experiences of women with disabilities of breast cancer screening. Data were collected via in-depth interviews and analysed thematically.
Data collection Ethical approval for the study was granted by the relevant institutional Human Research Ethics Committee (HREC). Participants were recruited via flyers distributed to the various disability support networks, women’s health networks and by media releases. Interested women contacted the researchers if they were interested in participating in face to face, telephone or online interviews. To further facilitate recruitment, those responding to the quantitative phase of the study were asked to contact the researchers if they were interested in being interviewed about their breast and cervical cancer screening experiences. Prior to the commencement of interviews, women were provided with a
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participant information sheet that provided details of the study and emphasised the voluntary nature of participation. Prior to signing a consent form, participants were asked to state their understanding of the requirements of participation in their own words to ensure informed consent was given. Participants were notified that if they became distressed during the interview, the researcher would stop the interview and they would be given the opportunity to withdraw from the study without consequences. Participants were also provided with a list of free counselling services to access in the event that they became distressed. None of the participants exhibited signs of distress nor did any choose to withdraw from the study. Twelve women with physical disabilities volunteered to participate in an interview. In-depth interviews were used to explore the cancer screening practices and experiences of these women accessing cervical and breast cancer screening. To maximise the opportunity for interested women to participate, they chose whether to attend face to face interviews or whether they preferred a telephone or online interview. Face-to-face interviews are considered as the best method of interviewing as they reportedly assist rapport building between participants and researchers and provide visual cues that enhance the quality of the data collected (Sturges & Hanrahan 2004, Polit & Beck 2012). However, telephone and online interviews have the benefit of being more convenient when face-to-face meetings may be difficult and/or costly due to geographical distance (James & Busher 2009, East et al. 2011, Polit & Beck 2012). One participant opted for a face to face interview and 11 chose to be interviewed via telephone. No participants elected to undertake online interviews. Interviews were digitally recorded and transcribed verbatim. Participants were initially asked a general open-ended question relating to their experiences of breast screening followed by a number of prompt questions to facilitate an in-depth exploration of the research topic.
Data analysis In keeping with qualitative research tradition, preliminary data analysis commenced as soon as the first piece of data was collected (Grbich 2007). On completion of data collection, data were transcribed and thematically analysed. Both researchers analysed transcripts independently, grouping common concepts that occurred throughout the transcripts into categories/themes (Grbich 2007, Polit & Beck 2012). Themes were then reviewed by both researchers until consensus of the final themes was reached.
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Rigour Analytical rigour of the study was addressed by ensuring that the data analysis proceeded inductively and that the emerging and developed concepts, categories and themes were logically consistent and grounded in the data, with final themes being representative of the data as a whole. Procedural rigour of the study was addressed by provision of clear, comprehensive description of all data collection procedures and tasks used. The measure for assessing overall quality for qualitative research studies is rigour or trustworthiness. The four criteria related to trustworthiness are: credibility, dependability, confirmability and transferability (Polit & Beck 2012). Credibility in this study was established by ensuring that the findings were grounded in the data and congruent with the aim of the study. Credibility was also enhanced by investigator triangulation where more than one researcher collected, analysed and interpreted the data. Dependability was addressed by both researchers independently analysing the data and then discussing the analysis and interpretations of the data until agreement of the final themes was reached. To ensure confirmability of data, the transcriptions were carefully read by the researchers, while listening to the audio-recordings of interviews to ensure accuracy in content and context, and data collection, data analysis and interpretations were discussed until consensus was found. Transferability or the applicability of the research findings to contexts outside that of the current study was addressed by provision of rich description of the study method and findings. This included presenting direct quotations from the participants to provide sufficient contextual information for judgements re contextual similarity and suitability to be made.
Findings The women who participated in interview were aged between 50–75 years of age with all but one being Australian born. Four of the women lived in rural areas, three lived in inner metropolitan and five in the outer metropolitan, areas of a large city. Their disabilities included one or more of the following: incomplete paraplegia, incomplete quadriplegia, congenital bone malformation, traumatic bone injuries, multiple sclerosis, rheumatoid and osteo arthritis, bilateral lower limb amputation, hearing and sight impairments, peripheral vascular disease and spinal injury/ deterioration as a result of poliomyelitis. Seven of the women accessed BCS on a regular basis (every 12 months
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to two years), with one woman being screened every six months. Five women had only accessed BCS once or twice and all of these women expressed a reluctance to attend further screening. As this study seeks to illuminate a human experience, the themes are presented without hierarchical categorisation, as they are emergent aspects of a holistic experience where no theme is of greater importance than another. Each theme contributes not only to understanding of the other themes, but also to the phenomenon under study as a whole, that is, women with disabilities experience of breast cancer screening. Four major themes reflected women with disabilities lived experiences of breast cancer screening: feeling I’m not in control; being ignored and not listened to; being helpless, alone and afraid, and; experiencing pain, torture and humiliation. Feeling I’m not in control Overwhelmingly participants conveyed a lack of control and sense of powerlessness when experiencing breast cancer screening. Some participants felt health care professionals saw them as dehumanised, depersonalised, voiceless bodies, almost like robots, that could be manipulated and moved in any way they saw fit to meet the needs of the breast cancer screening procedure, without regard for the participant’s dignity or physical, emotional, psychological and communicative needs. Participant 1 recalled: The radiologists weren’t forthcoming in helping at all. They were more interested that this was a production line (p. 1) . . . I just got the feeling I was a piece of meat. I wasn’t a person at all. (Participant 1, p. 13)
Participants were often not spoken to before being positioned, nor expected to speak to breast screening personnel. Participants described their alarm at the complete lack of consultation and/or notification when they were being physically positioned by others for the purpose of breast screening: A lot of my breast screening experience was not nice at all. . .. the lady who was doing that on me, she was not really – she was talking nice words, but the way she was touching me, moving me was not nice at all. I didn’t appreciate that at all, but I couldn’t complain because I was thinking that her job also is hard (Participant 3, p. 2) . . .they don’t even ask if they can assist you. (p. 7)
The participants’ sense of loss of control was exacerbated by the fear of serious consequences that might be brought on by the control exerted by others on their defenceless and vulnerable bodies. High levels of fear and anxiety for their
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safety for some participants prevented them from regaining control or even voicing their concerns: I was so overwhelmed by fear and I was outnumbered by people. . . ..I was so fearful of just falling crashing to the ground. . .it was like they had taken over my body. (Participant 1, p. 11)
The fear that health care professionals positioning manoeuvres on their body might imminently lead to dire, even life threatening consequences led other participants to vehemently protest their loss of control and forced positioning: Yes, I said if you try and twist my neck any further, you may change my status from being a modified quad to being a total quad. I don’t want to be a total quad. You want to wring my neck, it won’t go that way. . .. Not even looking at the body. It was the absolute physical limitation of the human skeleton were ignored, and I sort of looked upon that as a very poor medical technique. You know, surely you know where the bones are and what they can do. (Participant 10, p. 8)
Being ignored and not listened to The participants were aware that correct positioning was important if mammography is to be successful and described their efforts to communicate and cooperate with health care professionals, particularly in relation to their unique concerns and needs for the breast screening procedure. These efforts were generally unsuccessful; leaving them feeling ignored and not listened to. On the other hand, health care professionals required them to strictly obey their instructions, usually without regard for the woman’s unique needs or checking if the woman had heard or understood them. This is illustrated by the following participants’ experiences: If you go for a mammogram even if you mention your deafness it’s usually ignored. So you don’t really know what’s going on around you, they’ll talk and give you instructions and if they’re not looking at me then I have no idea. (Participant 7, p. 1)
Most of the participants related how they needed help to undress and either sit erect or stand and lean forward into or hold onto the machine, or lift their arms over the image holder for the mammogram. Because they were not listened to and were seemingly invisible to breast screening staff, this assistance was usually not adequately provided or not provided at all, leaving them ignored, alone and at risk of harm. Participant 1 recounted that: I have a very bad vertigo problem, so standing alone, I am prone to falling and therefore, if I am not in the wheelchair I need to
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K Peters and A Cotton be with my frame, my walking frame. To do anything medically
I’ll say well I don’t hear all that well and they’ll be filling forms
like standing I will usually need to have somebody beside
out. So you find yourself quite isolated in a situation where you
me. There was nobody beside me . . . they just didn’t take into
sort of anticipate that it should be a friendly environment but it’s
consideration any of my disabilities or my medical condition.
not for people who don’t hear very well (Participant 7, p. 1) . . .
(Participant 1, p. 1)
They leave you in the room, wait there and they say something as
Some participants felt that they were not treated as human beings, but as products to be processed as quickly as possible. This was supported by the experience of not seemingly been seen or heard by health care professionals as they rushed to process those booked in for mammograms, perhaps too busy to listen to the women having them. The participants were perplexed and frustrated as to why they were treated this way and wondered how best to get attention of breast screening staff. Participant 12 stated: I do remember feeling very rushed and a bit like I’ve got to lie in the doorway to get their attention. I don’t think she even looked
they go and you never know what that is because they’ve already gone. (p. 3)
Experiencing pain, torture and humiliation For some women with disabilities who participated in the study, their experience of breast cancer screening was one of pain, torture and humiliation, as health care professionals handled their breasts and bodies to best position them for mammography. Participant 2 conveyed the pain and discomfort she experienced which was exacerbated by the lack of support in managing her disability during the procedure:
me in the face to be honest, the last technician she looked as if
It hurt a lot because you had to put yourself in those things that
something had happened. (Participant 12, p. 3–4)
remind me of an old-fashioned ironing press. I was standing while I had it done . . . I’ve got very little movement in my left arm, so I
Being helpless, alone and afraid Participants found themselves in an unfamiliar, unfriendly, health care environment where they felt helpless, alone and afraid. They were often left alone in areas in the facility to fend for themselves, or even when in areas occupied by health care professionals, they felt isolated, ignored and fearful of getting the help and care they needed. Participant 8 describes:
can’t hold my left arm up too high. So for me to hold my left arm up, I hold it up with my right hand. So it’s really hard. . . That’s what makes it seem so long. (Participant 2, p. 9)
Participant 1 graphically described her experience which has led her not to return for mammograms in the future: The last time I went for breast screening I was in my wheelchair and I also had a dislocated shoulder and I was actually manhandled out of my wheelchair and made to stand and they used my
I got locked in the toilets over there [at the breast clinic] and
shoulder and my arm. I had nobody to help support me stand up
couldn’t get out . . . Oh, for about half an hour I was yelling and
and I ended up with very bruised and battered breasts. . .. It was
trying to get out. . . but you try and open [the doors] and all of a
very humiliating; the whole experience was being very painful (Par-
sudden they close on you – I’m trying to back out and the thing’s
ticipant 1, p. 1) . . . The breast screening itself has given me such a
closed before I can get out. (Interview 8, p. 12)
horror and it was several years ago that I still have my referral for
Indeed, the feeling of fear could be so intense as to even prevent the woman being able to ask for help, as Participant 1 explained: I was feeling terrified and the helplessness and when you have an afterthought about it you think well, I should have said this or I should have said no you can’t do that. But I was so overwhelmed
this year and its sitting on my notice board. (p. 10)
The physical handling by health care professionals led not only to the participant’s feelings of pain and being tortured, but also of being humiliated and ashamed as their bodies were being touched and contorted in ways that were unacceptable to them but they were unable to put a stop to.
by fear . . . I felt totally helpless and alone and I was also in a great
For the breast screening, I don’t know how to describe it. It’s just
deal of pain. (Participant 1, p. 11)
like they are torture. They are torture. You know how they are tor-
Participants noted that being effectively excluded from essential information such as what is going on, who is undertaking the procedure and what is required of them, created fear, anxiety and feelings of helplessness, isolation and abandonment. Participant 7 noted:
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ture? . . . A lot of my breast screening experience, I was like –it was shameful. I was ashamed. I don’t know why. (Participant 3, p. 2). I’m not going to do mammogram. If have a cancer, that’s it. I am not going. It’s terrible. It was so painful that it was unbearable. (Participant 9, p. 7)
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Discussion The study explored experiences of breast cancer screening for women with physical disabilities and illuminated significant barriers they experienced. The study showed that those who are able to access screening often encounter such knowledge, attitudinal and structural barriers and unsatisfactory experiences that deter them from wanting to participate in further screening, putting them at risk for delayed detection and poorer outcomes for breast cancer. These findings are consistent with previous studies, some conducted more than two decades ago (for example, Rimer et al. 1989, Nosek et al. 1995), examining barriers to reproductive health maintenance among women with physical disabilities. The context in which breast cancer screening occurred was important for the women in this study, as it influenced not only their experience, but also the success of the procedure and their probability of returning for future breast cancer screening. Many experienced an unfriendly, strange or alien environment, in which they felt isolated, afraid and helpless. Knowledge, attitudes and behaviours of health care professionals presented barriers to women with disabilities in the study. The women in the study expressed concerns about their lack of knowledge of physiology and anatomy, use of the mammogram machine and the unique needs of women with disabilities in relation to the procedure. The women experienced the breast screening staff as very busy people, just doing their job, screening women as quickly as possible, which meant they often did not have time to speak or be spoken to by users of the service. Efficiency rather than quality or effectiveness appeared to the participants in the study to characterise and motivate breast screening staff. The women in the study were distressed by attitudes of and communication with health care professionals, whereby they felt that they were treated in ways that did not recognise their human rights to dignity, respect, self-determination and optimal preventative health care. There were added barriers to effective communication for women who were had sight or hearing impairments. While previous studies have noted that women with disabilities tend to be treated as genderless and asexual by health care professionals (Nosek et al. 1995, Armour et al. 2009), a disturbing finding from this study is that women with disabilities in the study experienced being treated as depersonalised and even dehumanised mannequins or as one woman stated as a ‘piece of meat,’ neither spoken or listened to as they were forced and contorted into positions, some of which produced pain and fear for their own health and safety.
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Women with physical disabilities in the study experienced powerlessness and lack of control over not only the procedure, but over their very own bodies, as they were physically positioned and manipulated by health care professionals to meet the machine’s requirements. For most of the women in the study, the mammogram experience was painful and humiliating. For some, it felt like being tortured; such experiences increased the likelihood that women with disabilities would not return for any further mammograms in the future. Nosek et al. (1995) noted that it is important health care professionals ‘regard women with disabilities as experts on the functioning of their own bodies’ (p. 516). However, in Poulos et al. (2011) observational study of women with physical disabilities undergoing mammograms, radiographers took control of the procedure, and their instructions and positioning of women with disabilities produced pain, anxiety, diminished dignity, involuntary spasms and fear, with some women slipping in and from their chairs. Even with radiographer positioning of the participants, not all the mammograms were successful.
Limitations There were several limitations to the study. The study did not compare the experiences of women with disabilities with women without disabilities, who, as some previous studies have discovered, may encounter some similar barriers to BCS. The qualitative study examined the experiences of a small sample of women with physical disabilities who volunteered to participate in this study. Hence, those who did not volunteer for the study may have different experiences of breast cancer screening. While this method does not allow for the generalisability of its findings, it does highlight women with disabilities experiences of breast cancer screening and the context in which it occurs, uncovering new information about the experience and the substantial barriers of breast cancer screening for them. However, further research using a larger sample would be useful to fully elucidate issues for women with disabilities in accessing BCS.
Relevance to clinical practice The findings of this study have important implications for clinical practice. Health care professionals have ethical, legal and professional requirements to provide quality health care and preventive services to all without discrimination. Indeed, The Code of Ethics for Nurses in Australia (Nursing & Midwifery Board of Australia et al. 2008)
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extols that ‘nurses value kindness and respect for others (p. 3) . . . valuing nonharmful, nondiscriminatory care appropriate to the individual that recognises their particular needs and rights, (p. 4). Nonetheless, consistent with previous research (Armour et al. 2009, Poulos et al. 2011), the findings of this study indicate that there is inadequate, problematic translation from professional codes and guidelines to practice, highlighting the urgent need for education and training of health professionals to enable them to provide empathetic communication and optimal cancer screening programs for women with disabilities that are inclusive, individualised and responsive to their unique needs and requirements. While many of the difficulties participants encountered were associated with mammography, largely attended to by radiographers, nurses are well positioned to effect real change in this area given that women with disability are required to be provided with access to a nurse (Australian Government Department of Health 2014). Further, as nurses are required to ‘discuss the benefits, limitations and potential harms of’ BCS with women (Association of Women’s Health Obstetric & Neonatal Nursing’s 2010, p. 608), insights provided by the findings of this study may help to inform strategies that nurses can encourage women with disabilities to use to enhance their BCS experience. One such strategy may be to alert the screening service to their disability prior to their visit to ensure adequate assistance and support is available to assist them. This study shows women with disabilities still face substantial barriers to breast cancer screening. This highlights the need for a new paradigm, with further research needed in relation to new approaches to education of nurses and other health professionals, as well as ways to effectively address these barriers, including collaborative models of preventive health care that empower women with disabilities and optimise breast cancer screening.
remain. Of major concern is that while at the macro level, international treaties and government health reform agendas seek to ensure people with disabilities have the same human rights to the highest standard of attainable health and health care, including preventive health care, this appears not to be experienced as implemented at the micro level by women with physical disabilities. Indeed, for most of the women with disabilities in the study, their very humanity and personhood were denied; their voices and protestations unheard, their pain and safety ignored, as they were processed as quickly as possible. It is little wonder that such experiences contribute to women with disabilities not to return for future breast cancer screening. The consequences of this decision for women with disabilities may be dire, denying them the chance of early detection and treatment of breast cancer. Education and training of nurses and other health care professionals in relation to their knowledge, attitudes, behaviours and communication with women with disabilities so as to optimise cancer breast screening is required. Such education needs to encompass a new paradigm that includes the sharing of power and expertise between user and provider, rather than perpetuate the top down, clinical, powerful expert-dependent, powerless user perspective that appears to still have dominance in BCS. A new paradigm is essential as these current perspectives have serious consequences for women with disabilities. The most severe of these consequences includes increased risk of morbidity and mortality from breast cancer that is undetected, or detected at a late and more advanced stage, because women have abandoned BCS due to negative cancer breast screening experiences.
Funding This study was funded by a University of Western Sydney Research Futures Grant.
Conclusion Despite over two decades of research of barriers, most of which are preventable, to cancer breast screening of women with disabilities, this study shows that many of these
Contributions Study design; KP & AC. Data analysis; KP & AC. Manuscript preparation of this paper; KP & AC.
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Barriers to breast cancer screening Clark MA, Rogers ML, Wen X, Wilcox V, McCarthy-Barnett K, Panarace J, Manning C, Allen S & Rakowski W (2009) Repeat mammography screening among unmarried women with and without a disability. Women’s Health Issues 19, 415–424. East L, Jackson D, O’Brien L & Peters K (2011) Healthcare experiences of women who have been diagnosed with a sexually transmitted infection. Journal of Clinical Nursing 20, 2259– 2265. Grbich C (2007) Qualitative Data Analysis: An Introduction. Sage Publications, Thousand Oaks, CA. James M & Busher H (2009) On line Interviewing. Sage, London. Jan S, Essue BM & Leeder SR (2012) Falling through the cracks: the hidden economic burden of chronic illness and disability on Australian households. Medical Journal of Australia 196, 29–31. Leung J, McKenzie S, Martin J & McLaughlin D (2014) Effect of rurality on screening for breast cancer: a systematic review and meta-analysis comparing mammography. Rural and Remote Health 14, 1–13. Liu SY & Clark MA (2008) Breast and cervical cancer screening practices among disabled women aged 40–75: does quality of the experience matter? Journal of Women’s Health 17, 1321– 1329. McCarthy EP, Ngo LH, Roetzheim RG, Chirikos TN, Li D, Drews RE & Iezzoni LI (2006) Disparities in breast cancer treatment and survival for women with disabilities. Annals of Internal Medicine 145, 637–645. Mele N, Archer J & Pusch BD (2005) Access to breast cancer screening services for women with disabilities. Journal of Obstetric, Gynecologic, and Neonatal Nursing 34, 453–464. Mudrick NR, Breslin ML, Liang M & Yee S (2012) Physical accessibility in primary health care settings: results from California on-site reviews. Disability and Health Journal 5, 159–167. Nosek M, Young M, Rintala D, Howland C, Foley C & Bennett J (1995) Barriers to reproductive health maintenance among women with physical disabilities. Journal of Women’s Health 4, 505–518.
Nursing & Midwifery Board of Australia, The Australian College of Nursing & Australian Federation of Nursing (2008) Code of Ethics for Nurses in Australia. N&MBA, ACN, AFN, Melbourne, Vic. Polit D & Beck C (2012) Nursing Research: Generating and Assessing Evidence for Nursing Practice, 9th edn. Wolters Kluwer Health/Lippincott Williams & Wilkins, Philadelphia, PA Poulos A, Balandin S, Llewellyn G, McCarthy L & Dark L (2011) Women with physical disability and the mammogram: an observational study to identify barriers and facilitators. Radiography 17, 14–19. Rimer B, Engstrom P, Keintz M, Myers R & Rosan J (1989) Barriers and facilitators to compliance with routine mammographic screening. Progress in Clinical and Biological Research 293, 125–133. Sturges J & Hanrahan K (2004) Comparing telephone and face-to-face qualitative interviewing: a research note. Qualitative Research 4, 107–118. United Nations (2006) Convention on the Rights of Persons with Disabilities. Available at: http://www.un.org/disabilities/convention/conventionfull.sht ml (accessed 7 April 2014). Verger P, Aulagnier M, Souville M, Ravaud J-F, Lussault P-Y, Garnier J-P & Paraponaris A (2005) Women with disabilities. General practitioners and breast cancer screening. American Journal of Preventive Medicine 28, 215–220. Wollin J & Elder R (2003) Mammograms and pap smears for Australian deaf women. Cancer Nursing 26, 405–409. World Health Organisation (2013) Disability and Health. (Fact sheet No 352). Available at: http://www.who.int/mediacentre/factsheets/fs352/en/(accessed 3 April 2014). World Health Organisation [WHO] (2013) Breast Cancer: Prevention and Control. Available at: http://www.who.int/cancer/detection/breastcancer/en/index1. html (accessed 7 April 2014). Yankaskas BC, Dickens P, Bowling M, Jarman MP, Luken K, Salisbury K, Halladay J & Lorenz CE (2010) Barriers to adherence to screening mammography among women with disabilities. American Journal of Public Health 100, 947–953.
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Barriers to breast cancer screening in Australia: experiences of women with physical disabilities Kath Peters and Antoinette Cotton
Aims and objectives. To explore the experiences of breast cancer screening for women with physical disabilities. Background. Despite women with disabilities having the same or greater risk of having breast cancer than women without disabilities, they are less likely to uptake breast cancer screening services. Design. Qualitative descriptive study. Methods. Twelve women with physical disabilities were recruited for the purpose of this study. Data were collected via semi-structured face to face or telephone interviews. Interviews were transcribed and data were analysed thematically. Results. Overwhelmingly, participants conveyed that their breast screening experiences were negative. The following four themes describe the experiences of breast cancer screening for women with physical disabilities: feeling I’m not in control; being ignored and not listened to; being helpless, alone and afraid and; experiencing pain, torture and humiliation. Conclusions. Women with physical disabilities experience substantial barriers to breast cancer screening. This research highlights that the attitudes and poor communication skills of health professionals served as a deterrent to future screening for participants. Relevance to clinical practice. By exploring experiences of women with physical disabilities of breast cancer screening, nurses and other health-care professionals can use this to develop and implement optimal approaches, such as collaborative models of care which empower women with disabilities.
What does this paper contribute to the wider global clinical community?
• This paper highlights the consid-
•
erable difficulties that women with physical disabilities encounter with breast cancer screening which serve as barriers to future screening. This paper uncovers the need to urgently address health professionals’ current knowledge, attitudes and practices for breast cancer screening for women with disabilities, and develop collaborative models of care that empower them.
Key words: breast cancer, disability, inequalities in health, primary care, qualitative study, reproductive health, screening, women’s health Accepted for publication: 12 August 2014
Globally, breast cancer is the most common cancer among women, and is the major cause of women’s cancer related deaths, with an estimated 508,000 women dying of this disease in 2011 (World Health Organisation [WHO] 2013). In
2010, breast cancer had one of the highest mortality rates for Australian women from cancer; second only to lung cancer (Cancer Australia 2014). Breast cancer screening (BCS) measures include mammography, ultrasound, self-breast examination (SBE) and clinical breast examination (CBE). Such screening is
Authors: Kath Peters, PhD, RN, BN, Associate Professor, School of Nursing & Midwifery, University of Western Sydney, penrith; Antoinette Cotton, PhD, RN, Lecturer, School of Nursing & Midwifery, University of Western Sydney, Penrith, NSW, Australia
Correspondence: Kath Peters, Associate Professor, School of Nursing & Midwifery, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia. Telephone: +61 2 46203567. E-mail: [email protected]
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provided by a multidisciplinary team including doctors, nurses and radiographers (Leung et al. 2014). Not all women who access BCS have care delivered by nurses. However, the National Accreditation Standards for BreastScreen Australia now require that women with disability have access to a nurse and have their individual needs met to support BCS (Australian Government Department of Health 2014). Breast cancer screening and early intervention for breast cancer has been shown to reduce morbidity and mortality and improve health outcomes for women (Australian Institute of Health and Welfare [AIHW] 2013a, b, 2014). Since 1991, Australia has had a comprehensive population-based, national-free mammography screening programme for the early detection of breast cancer for asymptomatic women, now known as BreastScreen Australia. As women aged 50 years and over are at greatest risk of developing breast cancer, the programme has targeted breast cancer screening for women aged 50–69 years, and in 2011–2012, 55% of women in this age group had a mammogram through BreastScreen Australia (AIHW 2013a, b). The Australian Government 2013–2014 Federal Budget commitment of $557 million over four years has allowed BreastScreen Australia’s targeted age group to be extended to women in Australia, aged 50–74 years (Australian Government Department of Health 2014). According to WHO (2013), 15% (over a billion people) of people in the world have a disability, with the prevalence of ageing and chronic illness contributing to rising rates of disability across the globe. For this study, we defined disability according to the International Classification of Functioning, Disability and Health (ICF) and acknowledge that ‘it is the interaction between individuals with a health condition (e.g. cerebral palsy, Down syndrome and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports) (World Health Organisation 2013). In 2009, 185% of Australians, (approximately four million people) and 52% of people in Australia aged 60 years and over had a disability, with 29% (634,600 people) of the Australian population having severe disabilities requiring assistance with mobility, communication or every day activities (Australian Bureau of Statistics [ABS] 2011a, b). In 2008, Australia became a party to The Convention on the Rights of Persons with Disabilities (CRPD) (United Nations 2006) which mandates that: States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall
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take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
a. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes. (CRPD, Article 25)
Women with disabilities, particularly those with complex physical or mobility impairments are less likely to have BCS than women without disabilities (Armour et al. 2009). Despite women with disabilities having the same or increased probability of having breast cancer (Mele et al. 2005, McCarthy et al. 2006), they are often effectively excluded from appropriate screening by substantial barriers, including those which structurally and systematically discriminate and exclude them from their human rights to adequate primary care and preventative health services (Yankaskas et al. 2010, Andresen et al. 2013).
Literature review/background to the study One of the challenges that face health-care professionals is providing accessible, adequate and appropriate preventive BCS services to women with disabilities. BCS services are often not readily available, offered or made accessible to women with disabilities (Angus et al. 2012). Where these services are available, physical, economic, social and cultural barriers may prevent or inhibit women with disabilities accessing or using them (Yankaskas et al. 2010, Angus et al. 2012, Andresen et al. 2013). Women with disabilities tend to have higher rates of poverty and lower levels of education and employment and are less likely to be covered by private health insurance than women without disabilities, which impedes their access to BCS programs, particularly in countries such as the USA (Wollin & Elder 2003, Mele et al. 2005, Chevarley et al. 2006, Liu & Clark 2008). While Australia has free BCS for women aged 50–74, the costs of transport, parking and assistance may be a considerable disincentive for women with disabilities to access preventative health care services (Jan et al. 2012). Physical barriers to breast cancer screening include: lack of access to adequate parking, transport, buildings, rooms, assistance, equipment and procedures needed to undertake breast screening (Armour et al. 2009, Poulos et al. 2011, Mudrick et al. 2012). Women with physical disabilities are more likely to experience considerable pain and discomfort
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during mammograms (Caban et al. 2011, Poulos et al. 2011) which may deter them from future BCS. Poulos et al. (2011) conducted an observational study of 13 Australian women with physical disabilities undergoing a mammogram. Of the nine participants who were wheelchair bound, five were unable to keep the required position for successful mammography as they were unable to stand or sit erect and lean into the machine. Eight out of the 13 participants did manage to have successful diagnostic images taken, but four of these women reported that they would not return for future screenings due to undesirable levels of physical handling, anxiety, pain, discomfort and diminished dignity they experienced during the procedure. Poulos et al. (2011) concluded that doctors and screening services personnel need to adequately assess women for prediction of mammography success and make available appropriate alternatives such as CBE and breast ultrasound to women who are not candidates for successful mammography. Of major concern are social barriers which rule out access to BCS for women with disabilities at the outset, such as attitudes and behaviours of healthcare professionals who may not recommend or offer BCS for women with disabilities (Yankaskas et al. 2010). Social stereotyping and inaccurate perceptions of women with disabilities by health professionals may lead them to view the women as genderless and asexual and hence not in need of BCS (Armour et al. 2009). Physicians’ feelings of discomfort have been associated with lack of providing or offering adequate BCS to women with disabilities (Verger et al. 2005). Buckley et al. (2012) found that clinicians believed that patients with severe and moderate disability may have limitations that might preclude or impede cancer screening. The clinical relationships between health care providers and women with disabilities, along with health care providers’ lack of knowledge, education and training have been identified as major barriers to women with disabilities accessing and using breast screening services. Mele et al. (2005) conducted a phenomenological study with 20 women, aged 21–65 years, with motor or sensory disabilities and their experiences with breast cancer screening. Negative experiences related by the women in the study included health care professionals: ignoring and failing to advocate for their nondisability health and preventive needs, spending insufficient time with them, and showing their lack of knowledge and discomfort with their disability, failing to provide adequate and appropriate information and communicating poorly with them. Liu and Clark (2008) found that the quality of BCS experience was significantly related to the likelihood of routine BCS, with privacy and respect contributing to enhanced quality of the experi© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 563–572
Barriers to breast cancer screening
ence. In a study by Clark et al. (2009), the majority of unmarried women with and without disabilities reported positive experiences of mammography. Nonetheless, women with disabilities were less likely to return for future mammograms than women without disabilities, whose repeat screenings increased from 59–86% following positive experience of mammography. While there has been extensive research into breast cancer screening for women in the general population, little research has been undertaken in regards to BCS in women with physical disabilities. There is a need, therefore, to explore the BCS experiences of women with disabilities so as to give voice to their experiences, issues and concerns, and to inform health care professionals in the knowledge, attitudes and practices needed to improve the experience, access, and uptake rates, of BCS for women with disabilities.
Aim of the study The aim of this study is to explore the experiences of women with disabilities of breast cancer screening (BCS).
Methods Design This paper stems from a larger concurrent mixed methods study that aimed to explore the barriers and facilitators to breast and cervical cancer screening for women with physical disability. This paper presents a component of the study which used a qualitative descriptive design to explore the experiences of women with disabilities of breast cancer screening. Data were collected via in-depth interviews and analysed thematically.
Data collection Ethical approval for the study was granted by the relevant institutional Human Research Ethics Committee (HREC). Participants were recruited via flyers distributed to the various disability support networks, women’s health networks and by media releases. Interested women contacted the researchers if they were interested in participating in face to face, telephone or online interviews. To further facilitate recruitment, those responding to the quantitative phase of the study were asked to contact the researchers if they were interested in being interviewed about their breast and cervical cancer screening experiences. Prior to the commencement of interviews, women were provided with a
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participant information sheet that provided details of the study and emphasised the voluntary nature of participation. Prior to signing a consent form, participants were asked to state their understanding of the requirements of participation in their own words to ensure informed consent was given. Participants were notified that if they became distressed during the interview, the researcher would stop the interview and they would be given the opportunity to withdraw from the study without consequences. Participants were also provided with a list of free counselling services to access in the event that they became distressed. None of the participants exhibited signs of distress nor did any choose to withdraw from the study. Twelve women with physical disabilities volunteered to participate in an interview. In-depth interviews were used to explore the cancer screening practices and experiences of these women accessing cervical and breast cancer screening. To maximise the opportunity for interested women to participate, they chose whether to attend face to face interviews or whether they preferred a telephone or online interview. Face-to-face interviews are considered as the best method of interviewing as they reportedly assist rapport building between participants and researchers and provide visual cues that enhance the quality of the data collected (Sturges & Hanrahan 2004, Polit & Beck 2012). However, telephone and online interviews have the benefit of being more convenient when face-to-face meetings may be difficult and/or costly due to geographical distance (James & Busher 2009, East et al. 2011, Polit & Beck 2012). One participant opted for a face to face interview and 11 chose to be interviewed via telephone. No participants elected to undertake online interviews. Interviews were digitally recorded and transcribed verbatim. Participants were initially asked a general open-ended question relating to their experiences of breast screening followed by a number of prompt questions to facilitate an in-depth exploration of the research topic.
Data analysis In keeping with qualitative research tradition, preliminary data analysis commenced as soon as the first piece of data was collected (Grbich 2007). On completion of data collection, data were transcribed and thematically analysed. Both researchers analysed transcripts independently, grouping common concepts that occurred throughout the transcripts into categories/themes (Grbich 2007, Polit & Beck 2012). Themes were then reviewed by both researchers until consensus of the final themes was reached.
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Rigour Analytical rigour of the study was addressed by ensuring that the data analysis proceeded inductively and that the emerging and developed concepts, categories and themes were logically consistent and grounded in the data, with final themes being representative of the data as a whole. Procedural rigour of the study was addressed by provision of clear, comprehensive description of all data collection procedures and tasks used. The measure for assessing overall quality for qualitative research studies is rigour or trustworthiness. The four criteria related to trustworthiness are: credibility, dependability, confirmability and transferability (Polit & Beck 2012). Credibility in this study was established by ensuring that the findings were grounded in the data and congruent with the aim of the study. Credibility was also enhanced by investigator triangulation where more than one researcher collected, analysed and interpreted the data. Dependability was addressed by both researchers independently analysing the data and then discussing the analysis and interpretations of the data until agreement of the final themes was reached. To ensure confirmability of data, the transcriptions were carefully read by the researchers, while listening to the audio-recordings of interviews to ensure accuracy in content and context, and data collection, data analysis and interpretations were discussed until consensus was found. Transferability or the applicability of the research findings to contexts outside that of the current study was addressed by provision of rich description of the study method and findings. This included presenting direct quotations from the participants to provide sufficient contextual information for judgements re contextual similarity and suitability to be made.
Findings The women who participated in interview were aged between 50–75 years of age with all but one being Australian born. Four of the women lived in rural areas, three lived in inner metropolitan and five in the outer metropolitan, areas of a large city. Their disabilities included one or more of the following: incomplete paraplegia, incomplete quadriplegia, congenital bone malformation, traumatic bone injuries, multiple sclerosis, rheumatoid and osteo arthritis, bilateral lower limb amputation, hearing and sight impairments, peripheral vascular disease and spinal injury/ deterioration as a result of poliomyelitis. Seven of the women accessed BCS on a regular basis (every 12 months
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to two years), with one woman being screened every six months. Five women had only accessed BCS once or twice and all of these women expressed a reluctance to attend further screening. As this study seeks to illuminate a human experience, the themes are presented without hierarchical categorisation, as they are emergent aspects of a holistic experience where no theme is of greater importance than another. Each theme contributes not only to understanding of the other themes, but also to the phenomenon under study as a whole, that is, women with disabilities experience of breast cancer screening. Four major themes reflected women with disabilities lived experiences of breast cancer screening: feeling I’m not in control; being ignored and not listened to; being helpless, alone and afraid, and; experiencing pain, torture and humiliation. Feeling I’m not in control Overwhelmingly participants conveyed a lack of control and sense of powerlessness when experiencing breast cancer screening. Some participants felt health care professionals saw them as dehumanised, depersonalised, voiceless bodies, almost like robots, that could be manipulated and moved in any way they saw fit to meet the needs of the breast cancer screening procedure, without regard for the participant’s dignity or physical, emotional, psychological and communicative needs. Participant 1 recalled: The radiologists weren’t forthcoming in helping at all. They were more interested that this was a production line (p. 1) . . . I just got the feeling I was a piece of meat. I wasn’t a person at all. (Participant 1, p. 13)
Participants were often not spoken to before being positioned, nor expected to speak to breast screening personnel. Participants described their alarm at the complete lack of consultation and/or notification when they were being physically positioned by others for the purpose of breast screening: A lot of my breast screening experience was not nice at all. . .. the lady who was doing that on me, she was not really – she was talking nice words, but the way she was touching me, moving me was not nice at all. I didn’t appreciate that at all, but I couldn’t complain because I was thinking that her job also is hard (Participant 3, p. 2) . . .they don’t even ask if they can assist you. (p. 7)
The participants’ sense of loss of control was exacerbated by the fear of serious consequences that might be brought on by the control exerted by others on their defenceless and vulnerable bodies. High levels of fear and anxiety for their
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safety for some participants prevented them from regaining control or even voicing their concerns: I was so overwhelmed by fear and I was outnumbered by people. . . ..I was so fearful of just falling crashing to the ground. . .it was like they had taken over my body. (Participant 1, p. 11)
The fear that health care professionals positioning manoeuvres on their body might imminently lead to dire, even life threatening consequences led other participants to vehemently protest their loss of control and forced positioning: Yes, I said if you try and twist my neck any further, you may change my status from being a modified quad to being a total quad. I don’t want to be a total quad. You want to wring my neck, it won’t go that way. . .. Not even looking at the body. It was the absolute physical limitation of the human skeleton were ignored, and I sort of looked upon that as a very poor medical technique. You know, surely you know where the bones are and what they can do. (Participant 10, p. 8)
Being ignored and not listened to The participants were aware that correct positioning was important if mammography is to be successful and described their efforts to communicate and cooperate with health care professionals, particularly in relation to their unique concerns and needs for the breast screening procedure. These efforts were generally unsuccessful; leaving them feeling ignored and not listened to. On the other hand, health care professionals required them to strictly obey their instructions, usually without regard for the woman’s unique needs or checking if the woman had heard or understood them. This is illustrated by the following participants’ experiences: If you go for a mammogram even if you mention your deafness it’s usually ignored. So you don’t really know what’s going on around you, they’ll talk and give you instructions and if they’re not looking at me then I have no idea. (Participant 7, p. 1)
Most of the participants related how they needed help to undress and either sit erect or stand and lean forward into or hold onto the machine, or lift their arms over the image holder for the mammogram. Because they were not listened to and were seemingly invisible to breast screening staff, this assistance was usually not adequately provided or not provided at all, leaving them ignored, alone and at risk of harm. Participant 1 recounted that: I have a very bad vertigo problem, so standing alone, I am prone to falling and therefore, if I am not in the wheelchair I need to
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K Peters and A Cotton be with my frame, my walking frame. To do anything medically
I’ll say well I don’t hear all that well and they’ll be filling forms
like standing I will usually need to have somebody beside
out. So you find yourself quite isolated in a situation where you
me. There was nobody beside me . . . they just didn’t take into
sort of anticipate that it should be a friendly environment but it’s
consideration any of my disabilities or my medical condition.
not for people who don’t hear very well (Participant 7, p. 1) . . .
(Participant 1, p. 1)
They leave you in the room, wait there and they say something as
Some participants felt that they were not treated as human beings, but as products to be processed as quickly as possible. This was supported by the experience of not seemingly been seen or heard by health care professionals as they rushed to process those booked in for mammograms, perhaps too busy to listen to the women having them. The participants were perplexed and frustrated as to why they were treated this way and wondered how best to get attention of breast screening staff. Participant 12 stated: I do remember feeling very rushed and a bit like I’ve got to lie in the doorway to get their attention. I don’t think she even looked
they go and you never know what that is because they’ve already gone. (p. 3)
Experiencing pain, torture and humiliation For some women with disabilities who participated in the study, their experience of breast cancer screening was one of pain, torture and humiliation, as health care professionals handled their breasts and bodies to best position them for mammography. Participant 2 conveyed the pain and discomfort she experienced which was exacerbated by the lack of support in managing her disability during the procedure:
me in the face to be honest, the last technician she looked as if
It hurt a lot because you had to put yourself in those things that
something had happened. (Participant 12, p. 3–4)
remind me of an old-fashioned ironing press. I was standing while I had it done . . . I’ve got very little movement in my left arm, so I
Being helpless, alone and afraid Participants found themselves in an unfamiliar, unfriendly, health care environment where they felt helpless, alone and afraid. They were often left alone in areas in the facility to fend for themselves, or even when in areas occupied by health care professionals, they felt isolated, ignored and fearful of getting the help and care they needed. Participant 8 describes:
can’t hold my left arm up too high. So for me to hold my left arm up, I hold it up with my right hand. So it’s really hard. . . That’s what makes it seem so long. (Participant 2, p. 9)
Participant 1 graphically described her experience which has led her not to return for mammograms in the future: The last time I went for breast screening I was in my wheelchair and I also had a dislocated shoulder and I was actually manhandled out of my wheelchair and made to stand and they used my
I got locked in the toilets over there [at the breast clinic] and
shoulder and my arm. I had nobody to help support me stand up
couldn’t get out . . . Oh, for about half an hour I was yelling and
and I ended up with very bruised and battered breasts. . .. It was
trying to get out. . . but you try and open [the doors] and all of a
very humiliating; the whole experience was being very painful (Par-
sudden they close on you – I’m trying to back out and the thing’s
ticipant 1, p. 1) . . . The breast screening itself has given me such a
closed before I can get out. (Interview 8, p. 12)
horror and it was several years ago that I still have my referral for
Indeed, the feeling of fear could be so intense as to even prevent the woman being able to ask for help, as Participant 1 explained: I was feeling terrified and the helplessness and when you have an afterthought about it you think well, I should have said this or I should have said no you can’t do that. But I was so overwhelmed
this year and its sitting on my notice board. (p. 10)
The physical handling by health care professionals led not only to the participant’s feelings of pain and being tortured, but also of being humiliated and ashamed as their bodies were being touched and contorted in ways that were unacceptable to them but they were unable to put a stop to.
by fear . . . I felt totally helpless and alone and I was also in a great
For the breast screening, I don’t know how to describe it. It’s just
deal of pain. (Participant 1, p. 11)
like they are torture. They are torture. You know how they are tor-
Participants noted that being effectively excluded from essential information such as what is going on, who is undertaking the procedure and what is required of them, created fear, anxiety and feelings of helplessness, isolation and abandonment. Participant 7 noted:
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ture? . . . A lot of my breast screening experience, I was like –it was shameful. I was ashamed. I don’t know why. (Participant 3, p. 2). I’m not going to do mammogram. If have a cancer, that’s it. I am not going. It’s terrible. It was so painful that it was unbearable. (Participant 9, p. 7)
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 563–572
Original article
Discussion The study explored experiences of breast cancer screening for women with physical disabilities and illuminated significant barriers they experienced. The study showed that those who are able to access screening often encounter such knowledge, attitudinal and structural barriers and unsatisfactory experiences that deter them from wanting to participate in further screening, putting them at risk for delayed detection and poorer outcomes for breast cancer. These findings are consistent with previous studies, some conducted more than two decades ago (for example, Rimer et al. 1989, Nosek et al. 1995), examining barriers to reproductive health maintenance among women with physical disabilities. The context in which breast cancer screening occurred was important for the women in this study, as it influenced not only their experience, but also the success of the procedure and their probability of returning for future breast cancer screening. Many experienced an unfriendly, strange or alien environment, in which they felt isolated, afraid and helpless. Knowledge, attitudes and behaviours of health care professionals presented barriers to women with disabilities in the study. The women in the study expressed concerns about their lack of knowledge of physiology and anatomy, use of the mammogram machine and the unique needs of women with disabilities in relation to the procedure. The women experienced the breast screening staff as very busy people, just doing their job, screening women as quickly as possible, which meant they often did not have time to speak or be spoken to by users of the service. Efficiency rather than quality or effectiveness appeared to the participants in the study to characterise and motivate breast screening staff. The women in the study were distressed by attitudes of and communication with health care professionals, whereby they felt that they were treated in ways that did not recognise their human rights to dignity, respect, self-determination and optimal preventative health care. There were added barriers to effective communication for women who were had sight or hearing impairments. While previous studies have noted that women with disabilities tend to be treated as genderless and asexual by health care professionals (Nosek et al. 1995, Armour et al. 2009), a disturbing finding from this study is that women with disabilities in the study experienced being treated as depersonalised and even dehumanised mannequins or as one woman stated as a ‘piece of meat,’ neither spoken or listened to as they were forced and contorted into positions, some of which produced pain and fear for their own health and safety.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 563–572
Barriers to breast cancer screening
Women with physical disabilities in the study experienced powerlessness and lack of control over not only the procedure, but over their very own bodies, as they were physically positioned and manipulated by health care professionals to meet the machine’s requirements. For most of the women in the study, the mammogram experience was painful and humiliating. For some, it felt like being tortured; such experiences increased the likelihood that women with disabilities would not return for any further mammograms in the future. Nosek et al. (1995) noted that it is important health care professionals ‘regard women with disabilities as experts on the functioning of their own bodies’ (p. 516). However, in Poulos et al. (2011) observational study of women with physical disabilities undergoing mammograms, radiographers took control of the procedure, and their instructions and positioning of women with disabilities produced pain, anxiety, diminished dignity, involuntary spasms and fear, with some women slipping in and from their chairs. Even with radiographer positioning of the participants, not all the mammograms were successful.
Limitations There were several limitations to the study. The study did not compare the experiences of women with disabilities with women without disabilities, who, as some previous studies have discovered, may encounter some similar barriers to BCS. The qualitative study examined the experiences of a small sample of women with physical disabilities who volunteered to participate in this study. Hence, those who did not volunteer for the study may have different experiences of breast cancer screening. While this method does not allow for the generalisability of its findings, it does highlight women with disabilities experiences of breast cancer screening and the context in which it occurs, uncovering new information about the experience and the substantial barriers of breast cancer screening for them. However, further research using a larger sample would be useful to fully elucidate issues for women with disabilities in accessing BCS.
Relevance to clinical practice The findings of this study have important implications for clinical practice. Health care professionals have ethical, legal and professional requirements to provide quality health care and preventive services to all without discrimination. Indeed, The Code of Ethics for Nurses in Australia (Nursing & Midwifery Board of Australia et al. 2008)
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extols that ‘nurses value kindness and respect for others (p. 3) . . . valuing nonharmful, nondiscriminatory care appropriate to the individual that recognises their particular needs and rights, (p. 4). Nonetheless, consistent with previous research (Armour et al. 2009, Poulos et al. 2011), the findings of this study indicate that there is inadequate, problematic translation from professional codes and guidelines to practice, highlighting the urgent need for education and training of health professionals to enable them to provide empathetic communication and optimal cancer screening programs for women with disabilities that are inclusive, individualised and responsive to their unique needs and requirements. While many of the difficulties participants encountered were associated with mammography, largely attended to by radiographers, nurses are well positioned to effect real change in this area given that women with disability are required to be provided with access to a nurse (Australian Government Department of Health 2014). Further, as nurses are required to ‘discuss the benefits, limitations and potential harms of’ BCS with women (Association of Women’s Health Obstetric & Neonatal Nursing’s 2010, p. 608), insights provided by the findings of this study may help to inform strategies that nurses can encourage women with disabilities to use to enhance their BCS experience. One such strategy may be to alert the screening service to their disability prior to their visit to ensure adequate assistance and support is available to assist them. This study shows women with disabilities still face substantial barriers to breast cancer screening. This highlights the need for a new paradigm, with further research needed in relation to new approaches to education of nurses and other health professionals, as well as ways to effectively address these barriers, including collaborative models of preventive health care that empower women with disabilities and optimise breast cancer screening.
remain. Of major concern is that while at the macro level, international treaties and government health reform agendas seek to ensure people with disabilities have the same human rights to the highest standard of attainable health and health care, including preventive health care, this appears not to be experienced as implemented at the micro level by women with physical disabilities. Indeed, for most of the women with disabilities in the study, their very humanity and personhood were denied; their voices and protestations unheard, their pain and safety ignored, as they were processed as quickly as possible. It is little wonder that such experiences contribute to women with disabilities not to return for future breast cancer screening. The consequences of this decision for women with disabilities may be dire, denying them the chance of early detection and treatment of breast cancer. Education and training of nurses and other health care professionals in relation to their knowledge, attitudes, behaviours and communication with women with disabilities so as to optimise cancer breast screening is required. Such education needs to encompass a new paradigm that includes the sharing of power and expertise between user and provider, rather than perpetuate the top down, clinical, powerful expert-dependent, powerless user perspective that appears to still have dominance in BCS. A new paradigm is essential as these current perspectives have serious consequences for women with disabilities. The most severe of these consequences includes increased risk of morbidity and mortality from breast cancer that is undetected, or detected at a late and more advanced stage, because women have abandoned BCS due to negative cancer breast screening experiences.
Funding This study was funded by a University of Western Sydney Research Futures Grant.
Conclusion Despite over two decades of research of barriers, most of which are preventable, to cancer breast screening of women with disabilities, this study shows that many of these
Contributions Study design; KP & AC. Data analysis; KP & AC. Manuscript preparation of this paper; KP & AC.
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