Experiences of women following treatment for invasive breast cancer
Research type
Research Study
Full title
Surviving Survivorship: Experiences and coping mechanisms of women following treatment for invasive breast cancer.
IRAS ID
217696
Contact name
Holly Blake
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
The proposed study will address the research topic of “Surviving Survivorship: Experiences and Coping Mechanisms of Women Treated for Invasive Breast Cancer”. Breast cancer is an extremely prevalent disease and the number of patients who are now surviving for significant periods of time after treatment is increasing rapidly year to year. The group will focus on patients who have been treated surgically for invasive breast cancer around 1 year ago, in order to explore their experiences over the past year and any coping mechanisms which have helped them (if any). The study will also briefly explore use of the electronic holistic needs assessment- which is a tool created my Macmillan Cancer charity in order to improve the survivorship pathway as part of policy guidelines set out by the national cancer survivorship initiative. Eligible participants will have been patients at Nottingham University Hospitals Trust who have undergone surgical treatment between 12 and 15 months previously, and have received a diagnosis of invasive breast cancer. Data will be gathered via a single, 30-60-minute semi-structured interview conducted in patient’s homes or at the Breast Institute at Nottingham if preferred. Outcomes of this study will be dissemination in academic journals and at conferences. The study findings will also be used to inform a larger PhD project which will ultimately aim to provide improvements in care and quality of life in these patients.
Lay summary of study results: Breast cancer is now extremely common, affecting around 1 in 8 women at some point during their lifetime. However, survival rates are generally very high, so there is an increasing population of people who are trying to move forwards with their lives and return to normal following their diagnosis and treatment.
Other research studies which have been done with breast cancer survivors have found that women can face numerous issues after their treatment. These can be physical (such as pain and hot flushes), emotional (such as worry and feeling sad) or social (such as financial or family worries). As a result of this, Macmillan Cancer Support developed the ‘Recovery Package’, which includes a number of actions to take with every person who survives cancer, in order to make sure they have all the support they need to be able to move forwards and return to normal as much as possible. One of these actions is to complete what is called a ‘Holistic Needs Assessment’, which involves doing an assessment on an iPad with a nurse or other member of staff. The Holistic Needs Assessment contains different concerns relating to physical, psychological and social issues that may be faced after a cancer diagnosis. The issues raised on this are then used to create a care plan so that people can be better supported in a way which is personal to them.
The Holistic Needs Assessment is quite new, so not much research has been done around how effective this is at supporting people, or if there is a better way we can do this. The study therefore aimed to understand women’s experiences of having breast cancer, what helped or did not help to cope with this, and their opinions of the Holistic Needs Assessment.Interviews with 15 women were completed, who had had their surgery approximately 12-18 months previously. Women were offered the choice to be interviewed at home or in hospital, 8 of which opted for home, and 7 opted for the hospital. These were tape recorded, written out and then analysed to look for key themes.
Findings
Coping with Breast Cancer
The majority of women mentioned ‘luck’ or ‘fate’ in their interviews as being an explanation for why they survived, or why the breast cancer was detected early. It was also commonly viewed that this was outside of their control.
There were numerous strategies women used to help them cope and this varied significantly between each person. These techniques included: getting support from friends and family, setting goals, doing exercise, keeping distracted, hiding their emotions and taking one step at a time. The majority of women were accepting of the fact they had had cancer, but several of them had been in denial about this when they were first diagnosed.
Women also got their support from different places and different people. Family and friends were extremely important sources of support, as were healthcare professionals, with some women also accessing support groups and Maggie’s. A big source of support reported by almost all women was from other cancer survivors, which people felt was different to other support because the person knew what they had gone through.Experiences of Breast Cancer
Overall, the women were happy with the care they received whilst in hospital and at appointments they attended before and after treatment. However, it was reported that people would like their care to be more personalised, so that they feel more supported and listened to.
Each person also mentioned some physical issues that had encountered at some point after their treatment. These included: Breast pain, hot flushes, general aches and pains, exhaustion, lymphoedema and problems sleeping. Hormone drugs such as ‘Tamoxifen’ and ‘Anastrozole’ were also commonly viewed as being the cause of a lot of these symptoms.Psychological Effects of Breast Cancer
There appeared to be negative thoughts around the word ‘cancer’, and many of the women associated this with death and dying.
There were significant individual differences about whether or not this experience had been lifechanging, with some women feeling this had completely changed their outlook on life, and others saying that they had returned to normal after treatment and nothing had changed.
There were some common negative emotions which had been experienced at some point since treatment, including: anger, guilt, feeling isolation, body image issues, sadness and fear. Again, these varied significantly between women, with some women feeling as though the fear was severe and would always be with them, and others saying they no longer thought about this.
Despite these negative feelings, the majority of participants also indicated a desire to move on with their lives and a determination to keep going. The women also generally described themselves as positive people, and that this personality trait allowed them to focus on moving forwards.The Holistic Needs Assessment
Overall, women viewed the assessment as being to help the hospital, rather than being an assessment to help support them. Several women did not see the value in this, or reported that they had not needed to raise any issues on it, so it was not relevant to them.
Women tended to view the time point at which this assessment was done as not being the most suitable, due to the fact they had just been told they were ‘cancer free’ or had limited time to stay at the hospital to complete the assessment.
Finally, some women stated that they felt unable to bring up emotional issues on the assessment, because it was harder to voice these or they were worried they would have to come back into hospital.
Future Research
From these study findings, research can now be done into how we can improve the way the Holistic Needs Assessment is used to support people. This will help us to devise strategies to help prevent or manage negative emotions and difficulties with coping, so that women are better prepared to move forwards following their treatment. The ultimate aim is to provide care which is more personalised, with each person eventually receiving all of the support, information and guidance they need following an event which for some people can be lifechanging.REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
17/EM/0046
Date of REC Opinion
24 Feb 2017
REC opinion
Further Information Favourable Opinion