Women with physical disability and the mammogram: An observational study to identify barriers and facilitators

Article Outline

• Abstract
• 1. Introduction
• 2. Method
  • 2.1. Sample
    • 2.1.1. Women with physical disability
    • 2.1.2. Radiographers
  • 2.2. Procedure
    • 2.2.1. Screening appointment
    • 2.2.2. The mammogram
  • 2.3. Data collection
  • 2.4. Data analysis
• 3. Results
  • 3.1. Barriers
  • 3.2. Facilitators and solutions
    • 3.2.1. Environmental adaptations
    • 3.2.2. Guidelines for radiographers
    • 3.2.3. Guidelines for women with physical disability
• 4. Discussion
• 5. Future directions
  • 5.1. Decision tool
• 6. Conclusion
• Conflict of interest statement
• Acknowledgements
• References
• Copyright

Abstract 

Purpose

To identify barriers and facilitators experienced by women with physical disability having a mammogram.

Method

Direct observation of the mammography procedure for women with a range of physical disability at screening facilities of BreastScreen NSW Australia.

Results

A volunteer sample of 13 women with varying degrees of physical disability participated in the study. The outcomes suggested that many barriers for women with physical disability can be ameliorated by environmental adaptations and guidelines for both radiographers and women. Some women however cannot be screened successfully, or can be screened only with a level of trauma and/or pain which militates against their continuation within the screening program. This study has identified physical limitations which preclude a successful outcome, those which increase the discomfort/pain of the procedure and aspects of the procedure which can be improved to minimise the experience of discomfort/pain.

Conclusion

From the outcomes of the study the development of a decision tool is indicated as a method of providing information for women with physical disability and their doctors as to the likelihood of a successful outcome to participation in mammography screening.

Keywords: Breast screening, Disability, Health care access, Preventive medicine

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1. Introduction 

Women with disability are at greater risk of experiencing inequalities of access to health services compared to other groups in society.¹, ², ³, ⁴ Mammography screening is a case in point which despite ongoing methodological debate⁵ is currently widely accepted as an effective method for the early detection of breast cancer.⁶ A successful outcome to participation in mammography screening is the production of optimally diagnostic images with minimal discomfort/pain. Women with physical disability are underrepresented in screening statistics,⁷, ⁸ potentially compromising the reduction in mortality rates attributed to screening mammography.⁶, ⁹, ¹⁰, ¹¹ These women are often at higher risk of developing breast cancer because of a poorer lifestyle due to their disability resulting in lack of exercise and obesity. It is therefore essential that all women, including those with physical disability within the targeted population age group have equal access to the mammography screening service.

Barriers to participation of women with physical disability are well documented and include: older age and extent of physical limitations,¹² access and transport problems, staff attitudes,¹³ and exclusion by health care providers of health issues other than disability.² Many women experience discomfort when having a mammogram¹⁴, ¹⁵ which can influence a return to screening.¹⁶ For women with physical disability the likelihood that the discomfort/pain experienced during mammography will be exacerbated relative to the severity of their physical impairment is considerable.¹⁷

Mammography is a physically challenging imaging procedure due to the anatomical location of the breasts and the need to optimally visualise all breast tissue. Manipulation of the breasts and manoeuvring the woman into the correct position is an integral part of the technique for a successful mammogram.¹⁸ To demonstrate this technique the process and action requirements for the routine cranio-caudal (CC) and medio-lateral oblique (MLO) views have been derived from the mammography literature¹⁸, ¹⁹, ²⁰ and are presented in Table 1, Table 2.

Table 1. Process requirements for successful mammography screening.

Table 2. Action requirements for successful mammography screening.

Given the physical and cognitive demands of the mammography procedure, some women with physical disability may experience such extensive barriers that a successful outcome is not possible. One way of determining these barriers and identifying facilitators is through an analysis of the interaction between the woman, the radiographers, and the mammography machine. Alleviating the barriers would increase the likelihood of a successful outcome, a return to regular screening and at the same time identify women for whom mammography may not be a viable option.

Previous studies investigating barriers to screening mammography for women with physical disability have used interviews²¹ or focus groups.¹⁷ The aim of this study was to determine by non-participant direct observation²² the specific barriers and facilitators experienced by women with physical disability having a mammogram and to propose potential solutions where possible. The study reported here comprises phase three of a larger study investigating barriers and facilitators to mammography screening.

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2. Method 

Ethics approval for the study was granted by the University of Sydney Human Ethics Committee, the Central and Eastern Sydney, the South Eastern Sydney and Illawarra, and the Northern Sydney Human Ethics Committees of the NSW Department of Health.

2.1. Sample 

Women with physical disability were recruited for the study from a group of 75 women with a range of physical disabilities who volunteered to participate in phase 1 of the larger study. Inclusion criteria were women who: had a physical disability; had never had a mammogram or had not returned for one in the previous two years; had remained symptom less of breast cancer; and who lived within the Sydney metropolitan area. Thirty potential participants were given the full details of the study while 24 indicated interest. These women were contacted 12 months later to confirm their participation and 13 women agreed to participate and were provided with the approved Participant Information Sheet and Consent form.

Radiographers were recruited by liaising with the BreastScreen Screening and Assessment Service (SAS) Directors and Chief Radiographers. Radiographers who agreed to participate were provided with the approved Participant Information Sheet and Consent form. The Chief Radiographer in the SAS assigned the individual participating radiographers to the observation screening sessions. Two radiographers were assigned to each session for women confined to a wheelchair in line with BreastScreen NSW’s standard practice for screening women with physical disability.

2.2. Procedure 

The women attended a convenient Screening and Assessment Service (SAS) for routine mammography screening. The research team made the screening appointment during regular hours, arranged transport and an attendant as required. BreastScreen NSW policy includes the standard provision of a ‘double booking’ for all women who self-identify as having a disability to ensure there is adequate time to complete the process.

The two radiographers assigned to each investigation participated as radiographers primarily but also as observers and reflective observers.²³ The first author observed the process throughout and completed an individual barriers and solutions profile (IBSP) form for each woman specifically developed by the researchers and wrote field notes. Following the completion of the mammogram women as well as the radiographers were debriefed by the first author and asked about the barriers they had experienced and any facilitators that would have assisted these difficulties. The images produced were immediately reviewed by BreastScreen NSW radiographers to determine if they were of sufficient quality for radiological reporting.

2.3. Data collection 

Data collection involved the completion of an ISBP in addition to field notes relating to the debriefing of the mammogram experience of each participant. In summary the main areas included in the data collection were barriers relating to: access to mammography facilities, the interaction between the women and the radiographers, the mammography procedure and the mammography equipment in addition to the diagnostic value of the mammogram images. The changes to standard procedures required to facilitate participation in mammography screening for each individual woman were also recorded on the IBSP.

2.4. Data analysis 

Using the Process and Action Requirements presented in Table 1, Table 2, the researchers scrutinised the IBSPs and the field notes using the following steps of a thematic analysis²²: collation of data on barriers and facilitators, analysis of similar and dissimilar barriers and facilitators to determine common properties and dimensions and identification of barriers and facilitators relative to the process and action requirements of the mammogram. Finally, outcomes which can be implemented were developed from the facilitators and identified as solutions.

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3. Results 

Thirteen women participated in the study and their demographic details including outcomes are provided in Table 3.

Table 3. Profile of participants.

The results of the thematic analysis are presented as barriers, facilitators and solutions related to the process and action requirements of mammography (Table 1, Table 2) and summarised in Table 4.

Table 4. Barriers, facilitators and solutions identified from the data.

3.1. Barriers 

Barriers were identified with all the process and action requirements of the mammogram. Of the 13 participants, 9 were confined to a wheelchair, and of these, 5 women were unable to maintain the required positioning for optimal diagnostic images (P1, P4, P7, P8, P12). For the remaining 8 women for whom diagnostic images were achieved, four indicated that the level of physical intervention and/or psychological discomfort they had experienced would dissuade them from returning for future screenings (P2, P6, P7, P10).

Physical limitations related to the action requirements to stand or sit erect (AR1) and to lean into the machine (AR2) were common to all women who were unable to achieve diagnostic images and consequently are identified as essential components for successful mammography screening. For these women, the requirement to stand or sit erect while pushing their chest area forward simultaneously, was simply not possible (P1, P4, P7, P8, P12). Attempts to use pillows to assist failed while pulling the woman’s upper body backwards by her shoulders was also unsuccessful and resulted in a painful stomach press by the film holder. Further, the whole ‘positioning’ procedure often resulted in women slipping downwards in and from their chairs. For these women not only were diagnostic images not possible but compounding this disappointment was the increased discomfort and anxiety, diminished dignity and undesirable levels of physical handling they had experienced. These difficulties in positioning and degree of physical handling also raise important issues relating to staff safety and risk assessment.

Barriers were identified which were not related to achieving diagnostic images but did exaggerate the discomfort/pain of the mammography experience. For example the woman’s head is required to be turned away at right angles from the breast being imaged during the CC view to ensure the face is not in contact with the equipment and all the breast tissue is included in the image (AR3). Involuntary movement of the head, a common experience in many conditions such as cerebral palsy (CP), Parkinson’s, and multiple sclerosis, prevented the requirement to keep still however participants with CP indicated that directions to keep still during the procedure had the opposite effect of actually causing involuntary spasm (P1, P2, P3).

Three women in our study (P1, P3, P7) were unable to hold onto the mammography equipment (AR4) which created instability and added to the anxiety of the procedure, while for others the need to raise arms and lift them over the image holder (AR5) was not possible (P2, P4, P7). Radiographer responses included attempting to ‘drape’ the women’s arms over the support bar, which, while succeeding in exposing the area for screening can leave the woman herself precariously balanced on the edge of her chair, again potentially increasing anxiety and discomfort/pain.

3.2. Facilitators and solutions 

Facilitators which could contribute to improving the mammogram experience were identified for all barriers and represent a compilation of data recorded from the women, from the radiographers and the observer. They were categorised using a three-pronged approach: (a) Environmental adaptations within the screening facility (b) Guidelines for radiographers incorporating specialised training for radiographers to understand the specific needs of particular women and (c) Guidelines for women with disability.

While extra time, plus the assistance of a support person are relatively easy to implement, adaptations suggested to the mammography equipment and wheelchairs are more difficult due to availability and costs (see AR1-4 Table 4).

Radiographers can substantially contribute to improving the experience of the mammogram for women with physical disability. The content of proposed radiographer guidelines was developed from the data in our study that indicated the need for radiographers to undergo specific training particularly in communicating with women with physical disability and ensuring their communication is effective. It seemed clear on one occasion that the radiographer’s verbal description of the process had not been entirely absorbed, and so the subsequent physical experience became an unexpected ordeal which they wished to end before the screening was complete. ‘I want to go home’ was this participant’s unfortunate response to the ordeal (P4). Effective communication will encourage an environment of trust in which the women feel sufficiently confident to express their needs.

As our observations illustrated, radiographers routinely attempt to establish a woman’s capacities through self-reporting on whether she is able to stand or whether she is able to understand instructions and explanations. Any misinterpretation is potentially dangerous: for example, one participant indicated she could stand and two radiographers attempted to support her without success (P4). Some people are able to stand if supported by appropriately trained people (e.g., therapists) but not so when supported by non-trained staff. Radiographers need to be aware of their own limitations and seek assistance when appropriate.

Modifying the two standard views used for mammography screening: the CC and MLO needs to be investigated. These views currently provide optimal visualisation for the detection of abnormalities, under specific conditions. That is, the presumption of the woman’s ability to conform to the Process and Action schedules. However, it is our contention following discussions with radiographers that an alternative series of images could be developed providing equally useful images with less trauma for the women involved. This set of alternative views needs to be developed and evaluated by specialist radiographers and published widely to facilitate the efficient completion and successful outcome for women unable to meet the current action requirements.

As well as modified views the data suggested a need for a coordinated protocol between the two radiographers working together with women with physical disability confined to a wheelchair. Each radiographer would take on a specific role and focus which when combined would ensure that the mammogram is completed effectively and efficiently in minimum time and with minimal manipulation and discomfort/pain.

These guidelines should also include essential material for radiographers relating to safety in physical handling and moving of women with physical disability. This is extremely important for occupational health and safety in the workplace and the prevention of injury.

To improve the mammography experience for women with physical disability our data indicated that while all women need information about the mammogram process it was clear that for women with physical disability this must be provided in appropriate formats and specifically address the issues they face. They require the usual information provided for women and more; they wanted to know in advance about the technical requirements of the procedure including the likelihood of discomfort/pain due to their physical limitations. The invasive nature of the process and the requirement to remain completely still during the mammogram was important information for them and they needed to know that they themselves should provide important information to the screening facility when they (or their carers) make an appointment. Information such as being confined to a wheelchair is essential if they are to be given longer appointments.

Women with physical disability in our study also wanted to know how to best assist the process and to take control over the procedure as appropriate. Data from the radiographers indicated that this could best be achieved by expressing needs during the mammogram and seeking help as appropriate. The guidelines should encourage women to provide wherever possible a realistic appraisal of their physical limitations and articulate this to radiographers as a way of facilitating the process and having control over the way the procedure is conducted and thereby minimising discomfort/pain.

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4. Discussion 

It is evident from the experiences of women with physical disability in our study that having a mammogram presents numerous barriers additional to those experienced by women without disability. It is also evident that radiographers also experience additional difficulties in their attempts to produce optimal images for these women. A significant source of these difficulties lies in the mammography machine itself but it appears extremely unlikely that a more flexible technology will be available anytime soon.

The outcomes of this study have provided new insights into the barriers and facilitators associated with having a mammogram for women with physical disability. Previous research has identified a broad range of barriers to participation in breast screening overall², ¹³, ¹⁷, ²⁴ but no known research has specifically focussed on observation of the actual mammogram. Standing for a mammogram has been identified as a physical barrier¹⁰ however our study found that sitting for a mammogram is acceptable as long as the erect position is maintained. Studies indicating the need for control over the procedure by women with physical disability¹⁷, ²⁴ were confirmed by our study data.

By focussing on the interaction between the woman with physical disability, the radiographer and the mammography machine we have been able to identify: physical limitations which preclude a successful outcome, those likely to increase the discomfort/pain of the procedure and aspects of the procedure which can be improved to increase the potential for a successful outcome to participation both in terms of optimal diagnostic images and minimal discomfort/pain. The implementation of environmental adaptations where possible, the development of guidelines for women with disability in appropriate formats and for radiographers will contribute to improving outcomes for women with physical disability having a mammogram.

A limitation of our study was the time period between recruiting women for the study and carrying out the observations which reduced our number of participants from 24 to 13. The 13 participants that did take part however provided a diverse range of physical disability, age and screening behaviour to satisfy the sampling needs of this qualitative study.

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5. Future directions 

Currently there remain barriers to mammography screening for some women which cannot be overcome by piecemeal adaptations to existing mammography processes. From the results of this study it is evident there is needed a re-evaluation of the ‘one size fits all’ perspective currently in place regarding mammography screening, to recognise that for some women the challenges posed by the nature of the mammography machine are insurmountable and that these women must therefore be offered timely and effective alternative screening options.

5.1. Decision tool 

The development of a decision tool for women with physical disability, their carers and their doctors would not only provide information on the level of difficulty of the procedure given specific physical limitations but also allow an informed decision to be made whether to participate in mammography screening. As we have seen, in some cases the level of intervention radiographers are forced to take to achieve a successful imaging outcome may also result in a level of distress for the woman concerned which in terms of likelihood of returning for screening, as well as dignity and safety, is unacceptable. Therefore the discomfort/pain and psychological trauma that may occur during the process of achieving a successful outcome must also be identified by the decision tool and related specifically to the individual woman’s physical limitations.

To be viable as a widely available tool for both community-based and clinical application the Process/Action requirements needs to be refined and simplified as a series of plain English questions and answers for use by women with physical disability and/or their attendant carers. This tool will then contribute to ensuring that all women including those with physical disability have equal access to an appropriate screening process for breast cancer.

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6. Conclusion 

Equity of access for all women to preventative health care is imperative but in the case of breast cancer screening and women with physical disability, mammography may not be an appropriate screening method for all. We propose that an adaptation of the Process/Action requirements presented here, as a decision tool predictive of mammography success, be developed for use both by women, by GPs and screening services personnel as confirmation. Acceptable alternatives to mammography such as clinical breast examination and/or breast ultrasound need to be made available for those who need them ahead of time to avoid the embarrassment, disappointment and trauma associated with an unsuccessful outcome.

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Conflict of interest statement 

All authors declare there are no conflicts of interest.

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Acknowledgements 

The authors would like to acknowledge funding support for this study from the National Breast Cancer Foundation of Australia. The Foundation however had no involvement in the study design nor collection, analysis and interpretation of data; the writing of the manuscript nor the decision to publish.

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