|15th March 2017
Cancer Research UK estimates that men in the UK have a 1 in 8 chance of developing prostate cancer at some point in their lives. It’s the most commonly diagnosed cancer in men and campaigns such as ‘Movember’ have been effective in raising awareness worldwide. Although not without its challenges, the appropriate care and support available to patients is gradually evolving. But it’s important not to overlook the all too often ‘unsung heroes’ of prostate cancer; those who care for the patients.
Associate Consultant Frances Peters takes a look at the issues and concerns facing the caregivers of those with prostate cancer.
A patient’s caregiver can be a friend, family member, partner, or a healthcare professional (such as a live-in nurse), so their needs and challenges could be wide and varied. For the purpose of this article, I will focus on patients’ partners as the caregivers.
From a personal perspective, I’ve watched my grandfather receive his diagnosis of prostate cancer. I’ve watched him cope brilliantly, receive exceptional treatment, and continue to live a relatively normal life. The process has been a testament to the care available in the UK and to my grandad himself. What I’ve also seen is my grandmother going through the whole process with him, working tirelessly in the background to make her husband better.
A recent pan-European study titled ‘Prostate Cancer – Living, not just surviving’ investigated the unmet needs of patients and their caregivers across ten different countries. It indicated that the patient’s partner tends to be the person in the family most involved with the management of the disease.
According to the ‘Prostate Cancer – Living, not just surviving’ survey, 34% of caregivers reported that their hobbies and personal activities were most affected by the patients’ disease. Furthermore, 39% of patients agree that their partner is the person in their family most negatively impacted by their disease.
In my grandmother’s case, her initial response to the diagnosis was to ask what she could do to help, and then devote herself to that cause. The doctor advised a high fibre diet, so she poured endless energy into finding and preparing the best possible high-fibre food to an extent that she described as “verging on obsessional”. Since she also had her own medication to stay on top of, my grandmother frequently wondered which of the two of them had or hadn’t taken their pills as she immersed herself in my grandfather’s world. Such was her level of emotional involvement, that at one of her own appointments, she found herself questioning whether or not she’d had cancer, before correcting herself. She has also since reflected that alongside all of this, she was constantly trying to mentally prepare herself for losing her husband.
On a broader scale, many caregivers report that their own hobbies and personal activities are most affected by the patients’ disease. This may result from the vast majority (80%) of patients not being able to continue with activities that they used to enjoy before diagnosis. One caregiver commented;
Despite the large extent of partners’ involvement, critical conversations relating to the disease can be very sensitive, so it’s easy for them not to be addressed. For example, although patients’ biggest worry (54%) is around the impact on intimacy with their partner, only 38% are willing to talk about it. Meanwhile, only 10% of wives consider it to be a significant concern, and yet the majority of them would like to discuss it. These unresolved worries can build up, and lack of awareness around one another’s thoughts can lead to a feeling of solitude in the face of an already challenging time.
If patients and their partners aren’t aware of each other’s concerns, it’s easy to see how doctors might not feel entirely informed. Unlike caregivers, the majority of patients are less concerned by their long-term survival than their quality of life, and yet 83% of HCPs believe that overall survival is patients’ priority. This potentially misinformed belief could directly influence treatment decisions.
If patients and their partners felt more able to discuss their concerns around prostate cancer, it’s far more likely that these conversations would filter into those with the doctor. If this was the case, patients and their partners would feel more supported by one another, doctors would feel more informed in their treatment decisions, and the patient would feel more empowered.
Due to caregivers’ significant involvement in prostate cancer, and the impact it can have on their wellbeing, it stands to reason that to optimise patient support, it’s important also to understand the needs of their partner. Naturally, as families, authorities, the public, and even the caregivers themselves focus attention on the patient during their time of need, their partner’s involvement can be overlooked. There’s an opportunity, therefore, to delve deeper into their requirements, as well as to focus specifically on the relationships between patients, their partners, and their doctors. By doing this, it could be possible to help caregivers to feel more supported, patients to feel more empowered, and doctors to feel more informed.
To add to this, interviews with healthcare professionals conducted by Blue Latitude Health have highlighted the increasing reliance on pharmaceutical companies to help provide services around emotional support as the NHS remains under substantial pressure. Here at Blue Latitude Health, we have extensive expertise surrounding prostate cancer and we have used our knowledge of the disease, and those affected by it, to develop services and materials focussed on both the patient and their caregivers.
If you’re interested to hear more about the work we do, we’d love to hear from you.
|14th May 2018
One in 10 women have Polycystic Ovarian Syndrome, however, recent evidence suggests women with gynaecological issues are being failed by the NHS. This honest account of the patient journey for a woman with PCOS highlights the emotional and physical barriers patients’ experience when seeking a diagnosis