1. Perspectives of dignity: remembering the patients' personal journeys
Perspectives of dignity: remembering the patients' personal journeys. Part of the Support 4 All Study
Taylor A1, BSc(Hons) MSc. Probst H1, PhD, MA, BSc(Hons), DCR(T). Shuttleworth P2, DCR(T) PgD. Needham A2 DCR(T) PgD.
1 Sheffield Hallam University. 2 Leeds Teaching Hospitals NHS Trust
Introduction
Radiotherapy is an accepted treatment following surgery for women diagnosed with breast cancer. However, little attention has been given to modesty and dignity that patients’ face during the radiotherapy experience or how they perceive the radiotherapy service. Previous reports have identified substandard care in some aspects of the radiotherapy service for breast cancer patients particularly in relation to maintenance of modesty during treatment 1.
Materials and methods
As part of the SuPPORT4 All study qualitative data was obtained from the completion of focus groups (FG) and personal journals at two UK radiotherapy departments by patients undergoing radiotherapy for breast cancer.
Table 1: Numbers, ages and means of participants
Results
Patient journals captured ‘in the moment’ feelings and emotions concerning participants treatment, while the focus groups facilitated discussion of their experiences. The use of breast gowns generated recurrent modesty issues but wider issues of dignity were reported that related to how individuals were managed within the radiotherapy department.
Figure 1: Themes from patients personal journals
Figure 2: Themes from focus groups
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Centre A
Centre B
Attendees at FG 6
Age range of FG attendees (years)
36-66
45-74
Mean age of FG attendees
51.2
63.5
Mean age of the FG attendees across the two departments
57.3
Number of journals completed 15
Summary of key themes
Table 2: Key concepts of the FG and personal journals
Key Concepts
Concepts
Variability of treatment staff and machines
Familiarity
Change increased anxiety
Loss of the personal connection to their 'team'
Basic introduction by staff often all that was required to reduce anxiety
Location and settings of patient waiting areas
Change of location in department increased anxiety
Areas often too open and exposed -liken to 'walkways' and 'corridors'.
Made patients feel conscious of themselves
Opportunity to opt into tattoo policy
Generally not an issue as long as patients were given the choice whether to have them or not.
Empowerment - feeling in control
Style and ease of use of gowns
Ease of use
Comfort
Ability to keep clean
Tailored approach to patients requirements
Follow-up/support
Limited explanation of procedures
Feelings of being 'launched out'
Impact of skin care advice/treatment instructions
Quality and volume of information varied between staff
Feelings of confusion
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Clinical impact
Patient experiences during treatment may affect subsequent ability to cope during the transition into survivorship; hence it is important to ensure the radiotherapy experience is positive and leaves patients feeling respected and their dignity maintained.
Conclusions
Previous research precepts that support, dignity, individualised care, service accessibility and staff relationships are indicative user needs from service providers 2.
The mainstay for maintaining modesty and dignity is often centered on the reduction of patient exposure whereas this research highlights wider issues including the need for an individualized approach to care of patients and the ability to maintain patient autonomy.
For many participants this study helped individuals move towards the next stage of their journey from active treatment to survivorship by providing an opportunity to impact and shape the services for the next generation of patients.
Information obtained at the focus groups on preferences for a immobilisation bra have been fed into the development of a product specification for a new immobilisation device. The information from the patient journals and focus group discussion on dignity have been fed back to the departments to build awareness of the importance of patient choice and the impact that even small gestures can have on the patient journey.
References
National Radiotherapy Advisory Group, Breakthrough Breast Cancer, Breast Cancer Care. What Breast Cancer Patients Want from a World Class Radiotherapy Service
2. Hendry J. A qualitative focus group study to explore the information, support and communication needs of women receiving adjuvant radiotherapy for primary breast cancer Journal of Radiotherapy in Practice 2011; 10:
Contact:
@AmyTaylM
(Sheffield Hallam University)
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