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Posts Tagged ‘cancer patient’

Recently I wrote about how being married improves outcomes for those with cancer. Spouses make a difference! (See the post)

What I also knew was that the improvement for people with cancer comes at a cost to the spouse. The additional stress, extra workload and role of caring all have the potential to adversely affect the health of those around the person with cancer. It would seem likely that the greatest effect would be on those closest – the spouses – though this depends on many factors.

Research has recently been carried out in this area, and it shows that there is an increase in healthcare needs and psychiatric diagnoses (mental health issues) amongst those who have a spouse with cancer. According to the researchers, this effect is greatest in male spouses. Perhaps this would indicate that the support structure of friends and family, which is more common amongst women, can alleviate the issues to some extent.

The study was limited in scope to those issues for which medical help was sought, and I would suspect that there would be a larger underlying issue of health issues experienced by spouses for which medical help has not been accessed. The researchers also recognise that there is a need for further study to ascertain ‘how to support the partner in the most effective way’. Families Facing Cancer will welcome such research, and the implementation of its findings.

Ref: ‘Influence on the Health of the Partner Affected by Tumor Disease in the Wife or Husband Based on a Population-Based Register Study of Cancer in Sweden’ – Katarina Sjövall, Bo Attner, Thor Lithman, Dennis Noreen, Barbro Gunnars, Bibbi Thorné and Håkan Olsson.

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As I’ve been discussing in previous posts, there are times when someone who has cancer chooses not to pass on all the information about their condition to those around them. Today I’m going to look at why they might do that, what effect it can have, and how the difficulties might be avoided.
These are the main reasons for secrecy that I am aware of:

  • The first is that people may not be ready to face the truth themselves. Telling someone else all about your illness leaves you no room to avoid or lessen the truth. People sometimes cope with cancer by ignoring it as best they can. They may have treatment but otherwise just pretend nothing has changed. So this may be the reason, if someone is downplaying the significance of their cancer, or doesn’t want to talk about it.
  • Another option is that the person who has cancer is depressed. They may feel much negativity about their life and at the extreme may not even be sure they want to survive. In this case, the person may not wish to share much about their illness because it would mean exposing their feelings, and maybe having pressure put on them to accept treatment.
  • There is also the case where someone wants to explore alternative methods of treatment, or simply does not believe that medical intervention is right. In this case, the person might withhold information in the belief that their family’s feelings could sway their decision. (Those who involve family members in their treatment decision are likely to have a greater degree of medical intervention than those who don’t.)
  • Lastly, I think people with cancer often keep information to themselves in the belief that this is a way of protecting those around them from difficult information.

The damage that can be caused by these kinds of secrecy are mostly mental and emotional.
Relationships may be permanently damaged because they cannot flourish in an environment of secrecy.
Cancer can give family members time to adjust to the future loss of that person. But when information is withheld, and the person dies when their family were expecting them to recover, it makes it harder for them to adjust and delays or disrupts the grieving process.
There is also the worry that can be generated. Because I do not know where my mother’s primary cancer was situated, I cannot make sure I guard against that specific cancer myself. This is a worry I have had to deal with.
Then there is the opportunity that cancer gives for growth – the inner strength that people find. Keeping back information denies them the opportunity for that growth.

My feeling is that information must be passed on. Cancer does not only affect one person, and so the information does not belong only to that person. But I do recognise all the above challenges and issues. So I think that time should be spent with each person who is diagnosed, both alone and with their family members. People should be assisted with passing on the information, guided into doing so where they are reluctant, and any fears of pressure being put on them addressed. Those with cancer should be protected from being forced into choices they don’t want to make – which may be made less likely with education of family members.
This kind of support service is already available to some after diagnosis, so please share with me what kind of support you and your family received. I look forward to you joining the debate.

With best wishes,
Anne

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Information matters! Research has shown that for women having a hysterectomy, having enough information before the surgery produces a better result. Being informed improves your health!

If ever there was a condition where much information is needed, surely cancer must be it. When someone is diagnosed with cancer, often everyone in the family feels they have stepped into a different world. A different language is spoken, and suddenly processes of the body we rely on every day are called into question. So I was interested to learn that the way information is supplied at the point of cancer diagnosis is set to change in the UK.

In the past, up to 39% of patients have been offered NO written information at the point of diagnosis. Where information is provided, it has been in the form of leaflets or other large chunks of information. This has to cover a lot of different scenarios, and so it may be unclear which parts actually apply to the person, their cancer and their treatment.

The new initiative is known as Information Prescriptions, and there is currently a small test being carried out, whilst all the information is compiled with a view to the system beginning to be available in 2010. In this initiative, the health professionals will compile a set of information which is relevant to the particular person, their diagnosis and agreed or possible treatments. This will be done in the same appointment where the diagnosis is given.

The advantages I see to this system are :

  • There will be less information to go through
  • The information will be available straight away
  • The information will be specific to the actual diagnosis, and situation (as cancer is such a diverse disease)
  • The information will reflect, and be relevant to, any decisions that have already been made
  • Any choices that are still to be made can be shown clearly – with information to help in making them
  • The information may be available in other formats, eg as digital documents, and this may help with spreading it through the family
  • The information can more easily be provided in other languages, for those who do not speak English as their first language, or as audio files for those with restricted vision

I regard it as very positive that the information provided to those with cancer and their families is being thought through so carefully. But of course, there are possible issues that this progress raises, which must be considered. I will begin to cover these in my next post. In the meantime, use the comments facility to let me know what you think. Are you in favour of this initiative? What information were you able to access through the health professionals? How does this compare with how things are done at your hopsital?

Until next time,
Anne

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