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Research Study on the Experience of Women with CF with Pregnancy 

Cystic Fibrosis Ireland are seeking participants for a research study entitled  

“Experiences of women with Cystic Fibrosis (CF) before, during and after pregnancy”

This study will assess the experiences which women with CF have linked with their pregnancy. It will be conducted with a view to learning about how they can better support mothers and mothers to be (with CF) in the future.

If you are a mother with CF, who has had a child (within the last five years), we invite you to take part in a telephone interview to talk about your experiences of pregnancy and childbirth.

The interview will cover the experiences which you faced before your pregnancy, in the prenatal period between conception and during the post-partum period of six weeks following the birth of your child.

The interview will include:

• An assessment of your opinions on the services and supports which were made available to you

• An evaluation of your beliefs and views on pregnancy

• A study of the impact of psychosocial supports, counselling services and other factors (where relevant) before and throughout the course of your pregnancy.

The study is being conducted in partial fulfilment of the requirements of the M.Sc. Global Health degree at Trinity College Dublin.

The interviews will be conducted over the phone on a voluntary basis and the information you provide will remain confidential.

More information on confidentiality and consent will be provided on the participation information leaflet which will be given to you upon enquiry. 

If you are interested in taking part in the study you can contact Anna Joe, Primary Investigator (Centre for Global health, Trinity College Dublin, University of Dublin) on 01 496 2433 / 083 349 4568 or email joea@tcd.

 

 

Statement from Cystic Fibrosis Ireland regarding the Hyde family 

Cystic Fibrosis Ireland has been in touch with the Hyde family to offer them any support it can at this extremely distressing time for them. We are very concerned about their possible deportation from Australia solely on the grounds that their son Darragh has cystic fibrosis and is perceived to be a future health and financial burden on the State. Even at this late stage, it is not too late for the Australian Government to change course and Cystic Fibrosis Ireland is calling on it to show compassion and generosity of spirit to a family that continues to make a valuable contribution to the Australia community in which they live.

Philip Watt CEO of Cystic Fibrosis Ireland stated:
“Cystic Fibrosis Ireland is writing to the Australian Ambassador to Ireland to ask for this decision to be reversed on humanitarian grounds. Cystic Fibrosis Ireland is also urging the Tánaiste and Minister for Foreign Affairs, Simon Coveney TD, to intervene on behalf of the Hyde family and to use his good offices to secure a positive response from the Australian Government.”

 

 

British Medial Journal supports an opt out approach to organ donation in the UK

CFI strongly supports the change to a soft opt out system of organ donation in Ireland. The following is a recent opinion piece in the widely respected British Medical Journal (BMJ) supporting a similar change to a soft opt-out organ consent system for the whole of the UK. This article draws on recent research to support such a change. 

John Chisholm: An opt-out system has the potential to increase donation rates and save lives

April 12, 2019

Organ donation saves lives. People die unnecessarily while on the waiting list for the organs they need in order to preserve and enhance their lives and health. There are benefits to individuals, their families, society, the National Health Service and the wider economy in promoting transplantation. That is why the British Medical Association (BMA) is committed to encouraging transplantation and to increasing the numbers of donors and of lives saved, because on average three people a day in the UK are dying waiting for an organ.

The BMA strongly supports the introduction of a “soft” opt-out system for organ donation, an opt-out system with safeguards, for which we have been campaigning since 1999. [1,2] The family would still be consulted, but dead donors’ consent would be presumed unless there is evidence that they did not wish to donate. In Wales, such a system has now been in place since December 2015. [3] In England, the Organ Donation (Deemed Consent) Bill has passed through Parliament, with implementation due to start in April 2020. In Scotland, a Bill is currently being debated.

There have been huge advances in organ donation over the past 20 years and everyone who has contributed to this needs to be congratulated. The BMA believes that, as one part of a broader strategy, including improvements in organ donation and transplantation infrastructure, resourcing and organisation, a shift to an opt-out system will have a positive impact on donation rates. It is, of course, difficult to extrapolate from the experiences of other countries, but comparative analyses have found that an opt-out system is one of a number of factors that are positively associated with higher donation rates.

Independent research evidence by the University of York, which undertook a systematic review of the published data, showed a positive association between opt-out legislation or practice and higher rates of donation. [4] Four methodologically sound studies comparing donation rates in countries with and without opt-out found that opt-out law or practice was associated with increased donation rates; in three of the studies the increases were statistically significant.  Five methodologically sound studies comparing donation rates in a single country before and after the introduction of an opt-out law all found a consistent increase in organ donation rates following the introduction of legislation. More recent evidence reviews, for the Welsh and Scottish Governments, have reached similar conclusions. [5,6]

Studies repeatedly show that most people—80 per cent or more—support organ donation but only about 38 per cent of the UK population have registered their wish to donate on the organ donor register. [7] Many people mean to do so but, in their busy lives, just never get around to doing so.  An opt-out system will help to overcome this problem and make it easier for those who are willing to donate—but never get around to signing up to the register—to have their wishes respected.

The BMA also supports the principle behind an opt-out system—that if people don’t object to their organs being used after death, they should be used to save lives. Under an opt-out system, individuals have the same choice as in an opt-in system—to donate or not to donate—so individual autonomy and choice are protected and respected under this system.  It is simply the way people’s views are expressed that would change. All organ donation is a gift and should be recognised as such, irrespective of the model of consent in place. Families are often comforted by knowing something good has come from their loss.

Our expectation is that, under an opt-out system, organ donation would become the default position which, over time, changes cultural expectations in society and becomes the societal norm.  Thus, there would be a shift to a more positive view of organ donation, so that donation becomes seen as the natural and expected thing to do—a change we would welcome.

We know there is already considerable public support for opt-out.  A poll the BMA commissioned in 2017 in England, Scotland and Northern Ireland found that 65 per cent of those questioned supported such a shift. [8]

However, advance and continuing publicity about the change is crucial. There should be a well-resourced, high-profile, consistent and persistent publicity campaign to enable a more informed public debate and to encourage people to make their wishes about donation known. The success of an opt-out system relies upon people knowing about their options and being able, easily and quickly, to opt out if that is their wish. This is not about forcing people into donation. It is about making it as easy as possible for an individual’s willingness to donate organs after their death to be acted upon. Additionally, publicity will increase awareness about transplantation and its benefits, increase the understanding and social acceptability of organ donation, and promote discussion within families and between friends, so that there is greater awareness of individuals’ wishes. The key determinative issue should be what the deceased person wanted in relation to donation.  The family’s role should be to provide information to contribute to the decision, rather than to give consent themselves.

The early evidence from Wales is encouraging. Only six per cent of the population has opted out of donation—about the number expected, based on surveys of the public’s view of organ donation.  The number of deceased donors has increased. [9] There has been a statistically significant increase in the consent rate among brain-dead donors, when comparing Wales with England. [10] Wales now leads the other countries of the UK in terms of donors per million population—at 25.4 donors per million population. [11] Knowledge about and support for the soft opt-out system is high amongst both the public and health professionals. A significant finding from the qualitative research with those approaching families in Wales is that more families are aware of the views of the deceased individual. [12,13] This is a very positive effect of the publicity surrounding the introduction of opt-out. It is known that the approach to and discussions with families are easier if the family is aware of the individual’s wishes.  

Hopefully, similar benefits will be seen in England, and in Scotland once legislation is approved.  Publicity, education, attitudinal changes, trained specialist staff, investment in infrastructure improvements, and legislative change to an opt-out system all have the potential to increase donation rates and save lives. 

See alsoIs an opt-out system likely to increase organ donation?

John ChisholmChair, Medical Ethics Committee, British Medical Association. Twitter: @DrJohnChisholm
 
Competing interests: My work for the BMA is remunerated by the payment of daily honoraria for attendance at meetings.
 

References:

1 British Medical Association.  Organ donation in the 21st Century: Time for a consolidated approach.  London: British Medical Association, 2000

2 British Medical Association.  Building on Progress: Where next for organ donation in the UK?  London: British Medical Association, 2012.

3 Human Transplantation (Wales) Act 2013.  Cardiff: Stationery Office Limited, 2013 https://www.legislation.gov.uk/anaw/2013/5/pdfs/anaw_20130005_en.pdf  

4 Organ Donation Taskforce.  The potential impact of an opt out system for organ donation in the UK.  A report from the Organ Donation Taskforce. Supporting information: Annex A.  London: Department of Health, 2008.

5 Palmer M.  Opt-out systems of organ donation: international evidence review.  Cardiff: Welsh Government Social Research, 2012. https://gov.wales/docs/caecd/research/121203optoutorgandonationen.pdf

6 Niven J, Chalmers N.  Opt out organ donation: A rapid evidence review.  Edinburgh: Scottish Government, 2018. https://www.gov.scot/publications/opt-out-organ-donation-rapid-evidence-review/

7 NHS Blood and Transplant.  Organ Donation and Transplantation Activity Report 2017/18.  Bristol: NHS Blood and Transplant. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/12065/transplant-activity-report-2017-2018.pdf

8 British Medical Association.  Press release: Two thirds of people support a ‘soft’ opt-out organ donation system, reveals new BMA survey.  London: British Medical Association, 2017. https://www.bma.org.uk/news/media-centre/press-releases/2017/february/two-thirds-of-people-support-an-optout-organ-donation-system

9 NHS Blood and Transplant.  Organ donation and transplantation activity data: Wales.  Annual data for financial years 2014/15 to 2017/18 and data for 2018/19 – first three quarters.  January 2019. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/15240/nhsbt-wales-summary-report-jan-19.pdf

10 NHS Blood and Transplant, National Organ Donation Committee.  Analysis of the effect of Welsh legislation on consent/authorisation rates: quarter 12.  January 2019. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/15404/quarterly-monitoring-of-welsh-legislation-jan19.pdf

11 NHS Blood and Transplant.  Organ Donation and Transplantation Activity Report 2017/18.  Bristol: NHS Blood and Transplant. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/12065/transplant-activity-report-2017-2018.pdf

12 Welsh Government.  Update to Survey of Public Attitudes to Organ Donation: Key figures from Wave 15.  Cardiff: Welsh Government, September 2018. https://gov.wales/docs/caecd/research/2018/180906-survey-public-attitudes-organ-donation-waves-15-en.pdf

13 Young V, McHugh S, Glendinning R, Carr-Hill R.  Evaluation of the Human Transplantation (Wales) Act: Impact Evaluation Report.  Cardiff: Welsh Government, 2017. https://gov.wales/docs/caecd/research/2017/171130-evaluation-human-transplantation-wales-act-impact-en.pdf