Symposium 11: Building a programme of genetics research to inform practice

Symposium lead: Alison Metcalfe, Senior Research Fellow, School of Health Sciences, The University of Birmingham, Birmingham, United Kingdom a.m.metcalfe@bham.ac.uk

Symposium chair: Professor Collette Clifford, University of Birmingham, Birmingam, United Kingdom

Symposia focus

The symposium will present projects from a programme of research which will have the following objectives:

  • Highlight ongoing research activity in genetics in relation to nursing.
  • Explore the implications this has for mainstream clinical practice and education.
  • Demonstrate the value of developing programmes of nursing research activity.

The programme of research described in this symposium was initiated as a result of rapid advances in genetic sciences which have major implications for the care all nurses provide for patients at each stage of their lifespan and for a range of genetic conditions from multi-factorial disease to rarer single gene conditions.

The symposium will use four interlinking projects from the programme of research, to demonstrate the psychosocial impact of integrating developments in genetics into mainstream health care, and highlight the implications this has for nursing practice and education.

The projects have been chosen because they show the implications of genetic based healthcare for nursing care across the lifespan from childhood to end of life, and vary in their size and level of support. This balance of different types of project around a core theme has the additional benefit of providing a good example of a developing research programme, which has to be the next step for nursing based research if it is to succeed (Luker, 2007). Following a short summarising of the main points after all the presentations, the audience will be asked for their views about the implications of supporting mainstream nursing’s integration of genetics in developing practice and education based on the evidence presented.

Participating delegates will gain:

  • Awareness of the implications genetics has for nursing practice, education and future research.
  • Insight into how a research programme can be developed, through identifying a universal topic with exploration of specific components in relation to nursing.

Reference

Luker K (2007) Assessing the quality of research: A challenge for nursing. Nursing Inquiry 14(1):1-1

Source of funding: Various -Includes Department of Health and BUPA Foundation

Level of funding: £500,000

Abstract one: Identifying patient information and education needs about a genetic predisposition to cancer

Alison Metcalfe

For many people whose families are affected by cancer, there is often concern that the cancer is due to an inherited predisposition to the condition. This was a two part study in the West Midlands region in which the first phase involved interviewing patients concerned about the inherited genetic risk of developing cancer. Each participant was interviewed twice pre and post their personalised genetic risk assessment for familial cancer.

The findings raised a number of issues relevant to nursing care provision in oncology and primary care about patient information and support needs which are discussed in the symposium. However a number of other concerns were raised, which had relevance for other family members at different stages of the lifespan and led to the development of further work in this area.

Abstract two: Communicating genetic risk information to children

Jane Coad

Despite the important psychosocial outcomes for individuals and families, to date there are a limited number of studies that include children and young people in terms of their understanding, experience of and views about genetic conditions affecting their families. The presentation will share findings from a national study which uses participatory techniques to explore communication with children about genetic conditions and how its affects them. This includes how children make sense of genetic risk information and how it impacts on their lives. The implications for nurses caring for children and families affected by genetic conditions will be discussed.

Abstract three: Young people coping with a potentially fatal genetic condition

Susan Royse

It is estimated that there are 100,000 sudden cardiac deaths (SCDs) each year in the UK, the majority of these deaths are caused by pre-existing coronary artery disease, however approximately 400 of these SCDs are unexplained and believed to be genetic in nature (Department of Health, 2005). When sudden cardiac death occurs in young adults, there is a growing body of evidence that shows it is often indicative of an inherited cardiac condition, which has predisposed an individual to SCD. Nurses need to equip themselves to support patients understanding of their risk, and make decisions about genetic testing and prophylactic treatments; in addition to developing the knowledge and skills to care for families coping with the knowledge that they or a close family member are at risk from serious illness or sudden death.

Abstract four: End of life care required by patients and families affected by an inherited genetic cancer

Kate Lillie

Care of the family is an integral part of palliative care. This paper will discuss the new challenges that are arising for palliative care nurses as people in Britain become increasingly aware that it is possible for adult onset multi-factorial diseases like cancer to be associated with an inherited predisposition to disease. The paper will focus on three patient vignettes that demonstrate the challenges and difficulties that can arise when a family history of cancer becomes a salient issue at the end of life. These will show how patients with a family history of disease can become worried about what their illness might imply for their children’s future susceptibility to cancer. It will discuss the nursing skills and knowledge base required by palliative care nurses to assess the risk of future disease and support families with a family history of cancer. It will draw attention to some of the reasons why the care needs of patients who potentially have an inherited predisposition to cancer are being overlooked within palliative care and document how this is affecting patients and their families.