Art & science
If you would like to contribute to the Art & science section, email [email protected]
The synthesis of art and science is lived by the nurse in the nursing act
Josephine G Paterson
Genetics: examining your competency of practice on a regular basis Benjamin C et al (2013) Genetics: examining your competency of practice on a regular basis. Nursing Standard. 28, 14, 37-43. Date of submission: December 24 2012; date of acceptance: May 31 2013.
Abstract This is the seventh article in a series examining how nurses can develop confidence and competence in genetics and genomics health care. This article focuses on identifying the nurse’s awareness of genetic and genomic issues and the effect this has on his or her practice. It considers the importance of reflection in recognising these issues as well as areas where professional development in genetics and genomics may be beneficial.
Authors Caroline Benjamin, guild senior research fellow and honorary senior research fellow, School of Health, University of Central Lancashire and Liverpool Women’s NHS Foundation Trust. Jan Birch, principal genetic counsellor, Cheshire and Merseyside Clinical Genetics Service and Liverpool Women’s NHS Foundation Trust. Aoife Bradley, lead genetic nurse counsellor, Northern Ireland Regional Genetic Counselling Service, Belfast City Hospital. Gail Mannion, lead/consultant genetic counsellor, Liverpool Women’s NHS Foundation Trust. Correspondence to: [email protected]
THIS ARTICLE EXAMINES the importance of reflection in nursing, particularly in relation to the development of genetic knowledge and its relevance to health care. It is based on competency 6 of the revised framework for genetics/genomics for nurses (Kirk et al 2013) (Box 1). This article outlines the four Rs that nurses must bear in mind when it comes to genetic health care (Kirk et al 2003): Recognise possible genetic conditions and family histories of concern. Appreciate the nurse’s Role in relation to the above. Understand the nurse’s Responsibilities. Refer appropriately.
Importance of this competency The majority of nurses (65%) on the Nursing and Midwifery Council (NMC) register are over the age of 40 and most likely undertook their training before 1995, when genetic health care
Keywords
BOX 1
Code of conduct, genetic counselling, professional competency, professional role
Competency 6
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above.
© NURSING STANDARD / RCN PUBLISHING
Examine one’s own competency of practice on a regular basis: Recognising areas where professional development related to genetics/genomics would be beneficial. Maintaining awareness of clinical developments in genetics/genomics that are likely to be of most relevance to the client group, seeking further information on a case-by-case basis. Based on an understanding of the boundaries of one’s professional role in the referral, provision or follow up to genetics services. (Kirk et al 2013)
december 4 :: vol 28 no 14 :: 2013 37
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Art & science competency standards: 6 was not part of the curriculum and much less was known about the contribution of genetic factors to illness and disability (NMC 2008a). Scientific advances in genetics have led to a change in understanding of the diagnosis and treatment of diseases (Department of Health 2008). There is greater recognition that the illness or health concern of patients today may well have a genetic component. In 2010, the NMC included genetics in its standards for pre-registration nurse education stating: ‘All nurses must carry out comprehensive, systematic nursing assessments that take account of relevant physical, social, cultural, psychological, spiritual, genetic and environmental factors, in partnership with service users and others through interaction, observation and measurement’ (NMC 2010). Genetic health care has been defined as ‘the study of heredity and variation’ (Kirk et al 2011). In the healthcare setting, this has previously been associated with single gene and chromosomal conditions traditionally managed within specialist genetics services. Genomics has been defined as ‘the study of the structure and function of the genome, including the interaction between genes and the environment’ (Kirk et al 2011), and is often associated with more common conditions such as diabetes or heart disease. Nurses are ideally placed to help families affected by genetic conditions because they tend to provide care for patients throughout their healthcare journey. They can offer an holistic, patient-centred approach to care, including empowerment and patient advocacy. The report to the Department of Health’s Nursing and Midwifery Professional Advisory Board (Kirk et al 2011) recommended that NMC standards be expanded to reflect the integration of genetics and genomics across all areas of nursing and midwifery training as well as continuing professional development (CPD), with monitoring of this an integral part of the quality assurance framework. NMC re-registration requires registered nurses to have completed 35 hours of CPD over the three years preceding re-registration and holds the individual personally accountable for actions and omissions in their professional practice, including when new advances in nursing practice occur (NMC 2008b). Nurses should always be able to justify the decisions they make in clinical practice. It is the advice of the Nursing and Midwifery Professional Advisory Board that (Kirk et al 2011): ‘Every nurse and midwife recognises and acts on the importance of genetic/genomics in the care they provide to people and families: 38 december 4 :: vol 28 no 14 :: 2013
Recognising the issues of particular relevance to their area of practice. Recognising the limits of their own competence. Knowing where and how to seek the most appropriate help and advice.’
Benefits to patients and patient and/or family care Studies have shown that many nurses and midwives lack the competence and confidence to use genetic knowledge in their practice (Metcalfe et al 2008, Benjamin et al 2009). Patients have indicated that they would like nurses to be better informed about genetics and that practice nurses could be a valuable resource for continuity of care and psychological support for families with genetic conditions (Genetic Interest Group 2008). Rare Disease UK (2011) found that patients valued coordinated multiprofessional care and ongoing holistic support. There have also been calls for a UK strategy to improve the knowledge of professionals and the referral of patients to specialised services (Rare Disease UK 2011). In 2012, the first UK plan for rare diseases was published for consultation (UK Health Departments 2012). The Telling Stories: Understanding Real Life Genetics website (www.tellingstories.nhs.uk) illustrates the effect and relevance of genetics on patient care. The stories on the website illustrate the importance of nurses’ recognising their limitations and of the benefits for practice when nurses are better informed, treating patients with sensitivity and supporting decision making. Table 1 links professional role to practice examples and suggests some stories on the website that may be of interest for further reading. Whatever the nurse’s role, it is likely that patients will approach him or her with questions or concerns regarding the cause or treatment of their conditions.
The nurse’s role In nursing there now is a greater focus on the prevention of ill health, as well as an increase in interprofessional communication and team working (National Nursing Research Unit 2008). In specialist genetics services, the family is usually the focus of care, but in the majority of nursing roles the patient is the priority and risks to other family members are not seen as especially relevant. This lack of focus on the family is illustrated in Elizabeth’s story (Telling Stories: Understanding Real Life Genetics 2010a). Elizabeth has a family history of cancer and recalls:
© NURSING STANDARD / RCN PUBLISHING
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
‘I think it was just a case of probably ignorance in those days and maybe not wanting to be aware that this was something that was affecting a family rather than an individual.’ It is important that nurses reflect on the care of their patients, including their roles and responsibilities, to ensure that they are providing optimum genetic and genomic health care. Nurses might find the questions in Box 2 helpful in guiding initial reflection
on patient care. Many nursing theories advocate the use of reflective practice (Taylor 2006). Oelofsen (2012) suggested a three-stage approach, involving curiosity, looking closer and transformation. For some, this reflection may include access to clinical supervision and for others it may comprise periods of self-reflection, drawing on personal experiences and appraisal of empirical evidence. Dealing with families rather than individuals can sometimes lead to complex confidentiality
TABLE 1 Examples of genetics in practice for different healthcare professionals Member of staff
Practice example
Responsibilities
Actions
Telling Stories linked themes
Healthcare assistant
You are talking with a woman recovering from surgery for ovarian cancer. She tells you that two of her sisters have also had ovarian cancer, which she finds odd, and she is worried about her daughter developing it.
The patient has asked you a health-related question that you feel unable to answer. With the patient’s agreement, you should discuss this with the nursing member of staff in charge.
You discuss the issue with a member of the clinical team who telephones the regional genetics centre and then makes a referral for the daughter to be assessed for familial breast and ovarian cancer risk.
Elizabeth’s story of her family’s history of inherited breast and ovarian cancer (Telling Stories: Understanding Real Life Genetics 2010a).
Staff nurse working on a children’s ward
You are approached by a 17-year-old patient with cystic fibrosis (CF) who asks you to explain why she has the condition and if she could pass it on to her own children in the future.
If you feel competent in explaining the genetic inheritance pattern of CF, then you may feel you can answer the enquiry. Otherwise, it is your responsibility to find where the patient can gain credible and/or additional information.
You ask the local CF team if they have a pathway for young people to learn about their condition. The local CF team in conjunction with a genetic counsellor from the regional service, has a monthly clinic for teenagers to which the patient is referred.
Abi’s story of receiving a genetic diagnosis at the age of 18 and how more information could have helped (Telling Stories: Understanding Real Life Genetics 2010b).
Outpatient sister in endocrinology
During an appointment with a patient who has diabetes, he tells you that his sister, who also had early-onset diabetes, has a son who had been diagnosed with diabetes the previous week. He did not know if the hospital needed this information because he had been seen by the genetics service ten years previously.
As a senior nurse within a specialty, it is your responsibility to be aware of recent clinical developments. You know it is now possible to test for monogenetic diabetes (diabetes caused by a single gene fault) and that 90% of patients with this aetiology are incorrectly diagnosed.
You refer the patient to your hospital diabetes specialist nurse, supported by a genetics diabetes nurse in another trust. You are aware that even though the patient had been referred in the past, this new information may be important.
Jenny’s story of the delay in recognising her and her son’s genetic diabetes (Telling Stories: Understanding Real Life Genetics 2011a).
Health visitor
You are supporting a young mother with a baby newly diagnosed with congenital hypothyroidism via bloodspot screening. She and other family members are asking if other children in the family are at risk.
As the main provider of information and support at this time, your responsibility is to find accurate information to answer the patient’s questions.
You are aware of the NHS Newborn Blood Spot Screening Programme (newbornbloodspot.screening. nhs.uk) and read that some cases are new events in the family, alternatively sometimes both parents are carriers. It is not possible for you to give accurate advice so you refer the patient to the paediatrician.
Caleb’s mother’s story of her son being diagnosed at age six with a rare chromosomal condition (Telling Stories: Understanding Real Life Genetics 2011b).
© NURSING STANDARD / RCN PUBLISHING
december 4 :: vol 28 no 14 :: 2013 39
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Art & science competency standards: 6 issues and ethical challenges for the nurse, particularly when genetic information relating to one patient has relevance to another. It is often easy to be overwhelmed by the amount of genetic information available, but what is important is to be genetically aware and if in doubt, to ask a more informed colleague. The case study examples in Boxes 3 and 4 illustrate the importance of demonstrating genetic awareness and recognising limitations in one’s knowledge when providing care. These examples highlight the value of communication, interprofessional teamwork and appropriate knowledge of guidelines, protocols, and formal and informal referral pathways relating to genetics.
BOX 2 Examples of questions to guide initial reflection on patient care What patients have I seen where genetics/genomics has been involved in their conditions? How confident am I that I am able to recognise situations where genetic risk may arise? How can I improve my knowledge to be more aware of the significance of genetic/genomic factors for my particular patient group? Would I know what questions to ask to assess whether genetic factors contribute to a patient’s care and how does this make me feel? How can I better support patients in my practice who have or are at risk of genetic conditions? How confident do I feel about being able to find what resources are available to me?
BOX 3 Case study of a staff nurse involved in delivering genetic health care A staff nurse on a medical ward was caring for Jane, who was admitted with palpitations. Jane was anxious as she explained that her sister had died suddenly at the age of 28 and that her grandfather had died at the age of 40 at the wheel of a car – both deaths remained unexplained. The nurse thought that this was unusual, but also recognised that she was not able to deal with the concern herself. After discussing the case with a medical colleague, she was made aware that there was a new inherited cardiac conditions (ICC) service in her region. With Jane’s consent, the ICC nurse arranged to come to the ward and, through analysis of the family tree, identified that Jane and other family members may be at high risk of sudden cardiac death. The ICC nurse was able to offer information, genetic testing and long-term support for Jane’s family. The staff nurse reflected that she was caring for patients with genetic health needs in her daily practice and signed up for the teaching session that the ICC nurse was planning for the following month.
40 december 4 :: vol 28 no 14 :: 2013
Over the past few years, new roles have developed encompassing genetic knowledge. There is a relatively new role of genetic counsellor, which requires undertaking a formal masters level training pathway and voluntary registration with the Genetic Counsellor Registration Board. Some people who become genetic counsellors are nurses, while others have a science or social science background. Registered genetic counsellors are often linked to regional clinical genetics services or disease-specific specialties. In parallel with the growth of the genetic counselling profession, nurses who wish to remain within their own specialty can gain knowledge in genetics (often through masters level modules) in their discipline and can be employed as specialist genetic nurses or nurse practitioners, for example in diabetes, haematology, cardiac care and cancer care. Since genetics is identified as playing an important role in disease causation, these nurses are ideally placed to identify and counsel patients in their specialties and in accordance with their roles and levels of responsibility. The British Heart Foundation funded the creation of a number of cardiac genetic nurse posts across the country, which have been evaluated favourably (Burton et al 2010). However, there have been obstacles, such as uncertain funding and lack of management
BOX 4 Case study of a midwife involved in delivering genetic health care Pam’s first child was born with Down’s syndrome and she could not remember the advice given to her at the time. During her second pregnancy, she asked at her booking appointment (at ten weeks of pregnancy): ‘What is the chance that I could have another baby with Down’s syndrome?’. The midwife discussed the screening tests currently available, but also referred Pam to an obstetrician, as she did not know how to answer the concern accurately. The paediatric notes showed that Pam’s first child has translocation Down’s syndrome, which is more unusual than trisomy Down’s syndrome. Translocations can be associated with a high risk of recurrence and blood serum screening tests may not pick this up (Newton 2004). On reflection, the midwife realised that she did not have the confidence to answer the concern, but did feel able to discuss this with a colleague. If she had lacked this awareness or confidence, she could have provided false reassurance to the patient. She decided to find out more about chromosome translocations and their recurrence risk as part of her professional development. Pam decided to have a chorionic villus sampling test at 11 weeks and was told one week later that her baby did not have Down’s syndrome.
© NURSING STANDARD / RCN PUBLISHING
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
support, to the development of these new roles (Martin et al 2009, Burton 2011). The Association of Genetic Nurses and Counsellors (www.agnc.org.uk) is an inclusive society that aims to provide a forum where practitioners working with genetic information can share ideas and develop their knowledge base through an annual conference and email forum. There are also other professional support organisations in the UK which provide guidance, such as the British Society for Genetic Medicine (www.bsgm.org.uk), the Cancer Genetics Group (www.ukcgg.org) and the Society for Genomics Policy and Population Health (www.sgpph.org.uk). The GenRes group (www.bsgm.org.uk/geneticshealthcare-research/genres) represents and supports genetic nurses, counsellors and research co-ordinators involved in genetics portfolio research.
Achieving this competency All nurses need to reflect on their practice in terms of their knowledge of genetics and genomics and its relevance to their patients. If, through knowledge of the genetic competencies, a nurse believes a patient may benefit from genetic information, then most of the 23 regional genetics services will have an informal enquiry system for healthcare professionals who are not sure whether referral to a genetics service is appropriate (Genetic Alliance 2013). The regional genetics service will also be a source of information regarding local guidelines and pathways for referral to other specialties, such as breast screening, cardiology or haematology. Depending on role and level of training, the nurse would perhaps be expected to identify and discuss concerns with an appropriate senior staff member rather than refer patients directly. In the past, patients tended not to be referred to regional genetics services by nurses or GPs because they believed this would incur an expense. However, the costs associated with clinical genetics referrals are funded by specialist commissioning arrangements. Two areas of the NMC (2008b) code of practice are crucial to the role and responsibility of the nurse in relation to the genetic contribution to health. These are guidance related to skills and knowledge, and guidance relating to teamwork. The genetics competencies covered in this series complement The Code (NMC 2008b) and provide an educational framework, including practice indicators, to enable nurses to assess if they are safe and effective practitioners. Nurses could use the areas from The Code (NMC 2008b) outlined in Box 5 to help reflect on how they can meet the requirements of competency 6.
© NURSING STANDARD / RCN PUBLISHING
After reading this article, a nurse may be motivated to ascertain whether he or she is successfully reflecting on his or her practice using the questions in Box 6. If a nurse feels there are areas where he or she needs updating of skills or knowledge, this could be integrated into current professional practice by making use of the time provided during appraisal. These professional discussions provide opportunities to develop an action plan to be used as part of the nurse’s CPD portfolio. Nurses will have achieved competency 6 when they can demonstrate: Ongoing professional development in genetics and genomics within the CPD portfolio. An awareness of the boundaries of self and others involved in the provision of genetic and genomic health care.
BOX 5 Areas of the Nursing and Midwifery Council code of practice relevant to competency 6 Keep your skills and knowledge up to date: You must have the knowledge and skills for safe and effective practice when working without direct supervision. You must recognise and work within the limits of your competence. You must keep your knowledge and skills up to date throughout your working life. You must take part in appropriate learning and practice activities that maintain and develop your competence and performance. Work effectively as part of a team: You must work co-operatively within teams and respect the skills, expertise and contributions of your colleagues. You must be willing to share your skills and experience for the benefit of your colleagues. You must consult and take advice from colleagues when appropriate. You must treat your colleagues fairly and without discrimination. You must make a referral to another practitioner when it is in the best interests of someone in your care. (Nursing and Midwifery Council 2008b)
BOX 6 Examples of reflective questions to identify successful practice Do I think that my current knowledge base around genetic and genomic health care is adequate for my role? How could I access courses, reading and/or online tutorials as part of continuing professional development to improve my knowledge? Do I feel I am able to answer patients’ concerns and do I know the address of the regional genetics service in my geographical area? Have I seen a patient recently who, on reflection, could have benefited from referral to genetics services? Is there a lead clinician in my specialty who is interested in genetics or local referral pathways or guidelines? Are there any nurses specialising in genetics related to specific conditions in my local area?
december 4 :: vol 28 no 14 :: 2013 41
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Art & science competency standards: 6 An ability to enhance patient care through working collaboratively with other service providers. Regional genetics services and nurses specialising in the genetics of specific conditions, rely on the nursing community to make timely and appropriate referrals, and to provide continuing support and care to patients and families at risk of or who have genetic conditions.
Further information Nurses should reflect on their practice and examine what genetic influences could be present in diagnosing a condition or maintaining the health of their patients and families (National Genetics
and Genomics Education Centre 2013). Although more detail on information sources is given in the next article in this series, Genetics for Healthcare Professionals: A Lifestage Approach (Skirton and Patch 2002) is a useful resource, providing quiz sections to test the healthcare practitioner’s knowledge after each chapter. The National Genetics and Genomics Education Centre (www.geneticseducation.nhs.uk) provides information on learning about and teaching of core concepts in genetics and genomics. This site provides credible and practice-specific advice for nurses on assessing their knowledge level, how to approach patients for family history information, and advice regarding their role and practice, including links to specialist services. There is also
References Benjamin CM, Anionwu EN, Kristoffersson U et al (2009) Educational priorities and current involvement in genetic practice: a survey of midwives in the Netherlands, UK and Sweden. Midwifery. 25, 5, 483-499. Burton H (2011) Genetics and Mainstream Medicine: Service Development and Integration. PHG Foundation, Cambridge. Burton H, Alberg C, Hall A, Sagoo GS, Stewart A; Inherited Cardiovascular Conditions Services (2010) Inherited cardiovascular conditions: the challenges of genomic medicine. Heart. 96, 6, 474-476. Department of Health (2008) Our Inheritance, Our Future: Realising
the Potential of Genetics in the NHS. Progress Review. The Stationery Office, London. Genetic Alliance UK (2013) NHS Genetic Services in the UK. geneticalliance.org.uk/services.htm (Last accessed: November 19 2013.) Genetic Interest Group (2008) The Family Route Map Project: Finding A Way Through the Maze. geneticalliance.org.uk/ docs/FRMfinalReport.pdf (Last accessed: November 13 2013.) Kirk M, McDonald K, Anstey S, Longley M (2003) Fit for Practice in the Genetics Era. A Competence Based Education Framework for Nurses, Midwives and Health Visitors. University of Glamorgan, Pontypridd.
42 december 4 :: vol 28 no 14 :: 2013
Kirk M, Campalani S, Doris F et al (2011) Genetics/Genomics in Nursing and Midwifery: Task and Finish Group Report to the Nursing and Midwifery Professional Advisory Board. tinyurl. com/ojc29sq (Last accessed: November 19 2013.)
Metcalfe A, Haydon J, Bennett C, Farndon P (2008) Midwives’ view of the importance of genetics and their confidence with genetic activities in clinical practice: implications for the delivery of genetics education. Journal of Clinical Nursing. 17, 4, 519-530.
Kirk M, Tonkin E, Skirton H (2013) An iterative consensus-building approach to revising a genetics/genomics competency framework for nurse education in the UK. Journal of Advanced Nursing. Doi: 10.1111/jan.12207.
National Genetics and Genomics Education Centre (2009) How is Genetics Relevant to My Role? tiny.cc/genetics_ factsheet (Last assessed: November 19 2013.)
Martin G, Currie G, Finn R (2009) Bringing genetics into primary care: findings from a national evaluation of pilots in England. Journal of Health Services Research and Policy. 14, 4, 204-211.
National Genetics and Genomics Education Centre (2013) Genetics in Your Clinical Practice. www.geneticseducation.nhs.uk/ downloads/0065Genetics_in_your_ Clinical_Practice.pdf (Last assessed: November 19 2013.)
© NURSING STANDARD / RCN PUBLISHING
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
a tool available enabling healthcare practitioners to identify personal learning needs and document a development plan, which could be used as a prompt to discussion at an annual appraisal or review, as could the factsheet How is Genetics Relevant to My Role? (National Genetics and Genomics Education Centre 2009).
Conclusion Scientific advances in genetic and genomics enable healthcare practitioners to provide specific diagnostic information and treatments that are tailored at an individual patient level. This requires nurses to be aware of the professional need to keep up to date in this rapidly changing
National Nursing Research Unit (2008) Policy+ Review: A Collection of 35 Issues of Policy+ to Mark the 35th Anniversary of the National Nursing Research Unit. www.kcl.ac.uk/nursing/research/ nnru/publications/Policy-plusReview.pdf (Last assessed: November 19 2013.) Newton R (2004) The Down’s Syndrome Handbook: A Practical Guide for Parents and Carers. Random House, London.
area and to acknowledge the limits of their knowledge. There is also a need to recognise that patients could have a genetic condition, to understand the role and responsibilities of the nurse, and to refer or seek advice on behalf of patients. This article has provided techniques to help improve nurses’ awareness of genetics and genomics health care and to recognise the issues that are relevant to their area of practice NS Acknowledgement Thanks to Maggie Kirk, professor of genetics education, Genomics Policy Unit, Faculty of Life Sciences and Education, University of South Wales, for her guidance and contribution in co-ordinating and developing this series.
of Conduct, Performance and Ethics for Nurses and Midwives. NMC, London. Nursing and Midwifery Council (2010) Standards for Pre-Registration Nursing ducation. NMC, London. Oelofsen N (2012) Using reflective practice in frontline nursing. Nursing Times. 108, 24, 22-24.
Nursing and Midwifery Council (2008a) Statistical Analysis of the Register 1 April 2007 to 31 March 2008. tiny.cc/analysis_2007_2008 (Last assessed: November 19 2013.)
Rare Disease UK (2011) ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ – Summary of the Report. www. raredisease.org.uk/documents/ improving-lives-summary.pdf (Last assessed: November 19 2013.)
Nursing and Midwifery Council (2008b) The Code: Standards
Skirton H, Patch C (2002) Genetics for Healthcare Professionals: A
© NURSING STANDARD / RCN PUBLISHING
Lifestage Approach. BIOS Scientific Publishers, Oxford. Taylor BJ (2006) Reflective Practice: A Guide for Nurses and Midwives. Second edition. Open University Press, Maidenhead. Telling Stories: Understanding Real Life Genetics (2010a) ‘That Gene Link Being Identified is Probably Bigger than Any Cancer.’ www.tellingstories. nhs.uk/stories.asp?id=100 (Last accessed: November 19 2013.) Telling Stories: Understanding Real Life Genetics (2010b) Turner Syndrome is Just A Small Part of Who I Am. www. tellingstories.nhs.uk/stories. asp?id=60 (Last accessed: November 19 2013.)
Telling Stories: Understanding Real Life Genetics (2011a) ‘Whatever Happens, You Will Still Be You’. www.tellingstories.nhs.uk/ stories.asp?id=95 (Last accessed: November 19 2013.) Telling Stories: Understanding Real Life Genetics (2011b) ‘I Look Back Now and Think He’s Done So Well’ – A Mother’s Account. www. tellingstories.nhs.uk/stories. asp?id=96 (Last accessed: November 19 2013.) UK Health Departments (2012) Consultation on the United Kingdom Plan for Rare Diseases: February 2012. www.gov.uk/government/ uploads/system/uploads/ attachment_data/file/215141/ dh_132883.pdf (Last accessed: November 19 2013.)
december 4 :: vol 28 no 14 :: 2013 43
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
If you would like to contribute to the Art & science section, email [email protected]
The synthesis of art and science is lived by the nurse in the nursing act
Josephine G Paterson
Genetics: examining your competency of practice on a regular basis Benjamin C et al (2013) Genetics: examining your competency of practice on a regular basis. Nursing Standard. 28, 14, 37-43. Date of submission: December 24 2012; date of acceptance: May 31 2013.
Abstract This is the seventh article in a series examining how nurses can develop confidence and competence in genetics and genomics health care. This article focuses on identifying the nurse’s awareness of genetic and genomic issues and the effect this has on his or her practice. It considers the importance of reflection in recognising these issues as well as areas where professional development in genetics and genomics may be beneficial.
Authors Caroline Benjamin, guild senior research fellow and honorary senior research fellow, School of Health, University of Central Lancashire and Liverpool Women’s NHS Foundation Trust. Jan Birch, principal genetic counsellor, Cheshire and Merseyside Clinical Genetics Service and Liverpool Women’s NHS Foundation Trust. Aoife Bradley, lead genetic nurse counsellor, Northern Ireland Regional Genetic Counselling Service, Belfast City Hospital. Gail Mannion, lead/consultant genetic counsellor, Liverpool Women’s NHS Foundation Trust. Correspondence to: [email protected]
THIS ARTICLE EXAMINES the importance of reflection in nursing, particularly in relation to the development of genetic knowledge and its relevance to health care. It is based on competency 6 of the revised framework for genetics/genomics for nurses (Kirk et al 2013) (Box 1). This article outlines the four Rs that nurses must bear in mind when it comes to genetic health care (Kirk et al 2003): Recognise possible genetic conditions and family histories of concern. Appreciate the nurse’s Role in relation to the above. Understand the nurse’s Responsibilities. Refer appropriately.
Importance of this competency The majority of nurses (65%) on the Nursing and Midwifery Council (NMC) register are over the age of 40 and most likely undertook their training before 1995, when genetic health care
Keywords
BOX 1
Code of conduct, genetic counselling, professional competency, professional role
Competency 6
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above.
© NURSING STANDARD / RCN PUBLISHING
Examine one’s own competency of practice on a regular basis: Recognising areas where professional development related to genetics/genomics would be beneficial. Maintaining awareness of clinical developments in genetics/genomics that are likely to be of most relevance to the client group, seeking further information on a case-by-case basis. Based on an understanding of the boundaries of one’s professional role in the referral, provision or follow up to genetics services. (Kirk et al 2013)
december 4 :: vol 28 no 14 :: 2013 37
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Art & science competency standards: 6 was not part of the curriculum and much less was known about the contribution of genetic factors to illness and disability (NMC 2008a). Scientific advances in genetics have led to a change in understanding of the diagnosis and treatment of diseases (Department of Health 2008). There is greater recognition that the illness or health concern of patients today may well have a genetic component. In 2010, the NMC included genetics in its standards for pre-registration nurse education stating: ‘All nurses must carry out comprehensive, systematic nursing assessments that take account of relevant physical, social, cultural, psychological, spiritual, genetic and environmental factors, in partnership with service users and others through interaction, observation and measurement’ (NMC 2010). Genetic health care has been defined as ‘the study of heredity and variation’ (Kirk et al 2011). In the healthcare setting, this has previously been associated with single gene and chromosomal conditions traditionally managed within specialist genetics services. Genomics has been defined as ‘the study of the structure and function of the genome, including the interaction between genes and the environment’ (Kirk et al 2011), and is often associated with more common conditions such as diabetes or heart disease. Nurses are ideally placed to help families affected by genetic conditions because they tend to provide care for patients throughout their healthcare journey. They can offer an holistic, patient-centred approach to care, including empowerment and patient advocacy. The report to the Department of Health’s Nursing and Midwifery Professional Advisory Board (Kirk et al 2011) recommended that NMC standards be expanded to reflect the integration of genetics and genomics across all areas of nursing and midwifery training as well as continuing professional development (CPD), with monitoring of this an integral part of the quality assurance framework. NMC re-registration requires registered nurses to have completed 35 hours of CPD over the three years preceding re-registration and holds the individual personally accountable for actions and omissions in their professional practice, including when new advances in nursing practice occur (NMC 2008b). Nurses should always be able to justify the decisions they make in clinical practice. It is the advice of the Nursing and Midwifery Professional Advisory Board that (Kirk et al 2011): ‘Every nurse and midwife recognises and acts on the importance of genetic/genomics in the care they provide to people and families: 38 december 4 :: vol 28 no 14 :: 2013
Recognising the issues of particular relevance to their area of practice. Recognising the limits of their own competence. Knowing where and how to seek the most appropriate help and advice.’
Benefits to patients and patient and/or family care Studies have shown that many nurses and midwives lack the competence and confidence to use genetic knowledge in their practice (Metcalfe et al 2008, Benjamin et al 2009). Patients have indicated that they would like nurses to be better informed about genetics and that practice nurses could be a valuable resource for continuity of care and psychological support for families with genetic conditions (Genetic Interest Group 2008). Rare Disease UK (2011) found that patients valued coordinated multiprofessional care and ongoing holistic support. There have also been calls for a UK strategy to improve the knowledge of professionals and the referral of patients to specialised services (Rare Disease UK 2011). In 2012, the first UK plan for rare diseases was published for consultation (UK Health Departments 2012). The Telling Stories: Understanding Real Life Genetics website (www.tellingstories.nhs.uk) illustrates the effect and relevance of genetics on patient care. The stories on the website illustrate the importance of nurses’ recognising their limitations and of the benefits for practice when nurses are better informed, treating patients with sensitivity and supporting decision making. Table 1 links professional role to practice examples and suggests some stories on the website that may be of interest for further reading. Whatever the nurse’s role, it is likely that patients will approach him or her with questions or concerns regarding the cause or treatment of their conditions.
The nurse’s role In nursing there now is a greater focus on the prevention of ill health, as well as an increase in interprofessional communication and team working (National Nursing Research Unit 2008). In specialist genetics services, the family is usually the focus of care, but in the majority of nursing roles the patient is the priority and risks to other family members are not seen as especially relevant. This lack of focus on the family is illustrated in Elizabeth’s story (Telling Stories: Understanding Real Life Genetics 2010a). Elizabeth has a family history of cancer and recalls:
© NURSING STANDARD / RCN PUBLISHING
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
‘I think it was just a case of probably ignorance in those days and maybe not wanting to be aware that this was something that was affecting a family rather than an individual.’ It is important that nurses reflect on the care of their patients, including their roles and responsibilities, to ensure that they are providing optimum genetic and genomic health care. Nurses might find the questions in Box 2 helpful in guiding initial reflection
on patient care. Many nursing theories advocate the use of reflective practice (Taylor 2006). Oelofsen (2012) suggested a three-stage approach, involving curiosity, looking closer and transformation. For some, this reflection may include access to clinical supervision and for others it may comprise periods of self-reflection, drawing on personal experiences and appraisal of empirical evidence. Dealing with families rather than individuals can sometimes lead to complex confidentiality
TABLE 1 Examples of genetics in practice for different healthcare professionals Member of staff
Practice example
Responsibilities
Actions
Telling Stories linked themes
Healthcare assistant
You are talking with a woman recovering from surgery for ovarian cancer. She tells you that two of her sisters have also had ovarian cancer, which she finds odd, and she is worried about her daughter developing it.
The patient has asked you a health-related question that you feel unable to answer. With the patient’s agreement, you should discuss this with the nursing member of staff in charge.
You discuss the issue with a member of the clinical team who telephones the regional genetics centre and then makes a referral for the daughter to be assessed for familial breast and ovarian cancer risk.
Elizabeth’s story of her family’s history of inherited breast and ovarian cancer (Telling Stories: Understanding Real Life Genetics 2010a).
Staff nurse working on a children’s ward
You are approached by a 17-year-old patient with cystic fibrosis (CF) who asks you to explain why she has the condition and if she could pass it on to her own children in the future.
If you feel competent in explaining the genetic inheritance pattern of CF, then you may feel you can answer the enquiry. Otherwise, it is your responsibility to find where the patient can gain credible and/or additional information.
You ask the local CF team if they have a pathway for young people to learn about their condition. The local CF team in conjunction with a genetic counsellor from the regional service, has a monthly clinic for teenagers to which the patient is referred.
Abi’s story of receiving a genetic diagnosis at the age of 18 and how more information could have helped (Telling Stories: Understanding Real Life Genetics 2010b).
Outpatient sister in endocrinology
During an appointment with a patient who has diabetes, he tells you that his sister, who also had early-onset diabetes, has a son who had been diagnosed with diabetes the previous week. He did not know if the hospital needed this information because he had been seen by the genetics service ten years previously.
As a senior nurse within a specialty, it is your responsibility to be aware of recent clinical developments. You know it is now possible to test for monogenetic diabetes (diabetes caused by a single gene fault) and that 90% of patients with this aetiology are incorrectly diagnosed.
You refer the patient to your hospital diabetes specialist nurse, supported by a genetics diabetes nurse in another trust. You are aware that even though the patient had been referred in the past, this new information may be important.
Jenny’s story of the delay in recognising her and her son’s genetic diabetes (Telling Stories: Understanding Real Life Genetics 2011a).
Health visitor
You are supporting a young mother with a baby newly diagnosed with congenital hypothyroidism via bloodspot screening. She and other family members are asking if other children in the family are at risk.
As the main provider of information and support at this time, your responsibility is to find accurate information to answer the patient’s questions.
You are aware of the NHS Newborn Blood Spot Screening Programme (newbornbloodspot.screening. nhs.uk) and read that some cases are new events in the family, alternatively sometimes both parents are carriers. It is not possible for you to give accurate advice so you refer the patient to the paediatrician.
Caleb’s mother’s story of her son being diagnosed at age six with a rare chromosomal condition (Telling Stories: Understanding Real Life Genetics 2011b).
© NURSING STANDARD / RCN PUBLISHING
december 4 :: vol 28 no 14 :: 2013 39
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Art & science competency standards: 6 issues and ethical challenges for the nurse, particularly when genetic information relating to one patient has relevance to another. It is often easy to be overwhelmed by the amount of genetic information available, but what is important is to be genetically aware and if in doubt, to ask a more informed colleague. The case study examples in Boxes 3 and 4 illustrate the importance of demonstrating genetic awareness and recognising limitations in one’s knowledge when providing care. These examples highlight the value of communication, interprofessional teamwork and appropriate knowledge of guidelines, protocols, and formal and informal referral pathways relating to genetics.
BOX 2 Examples of questions to guide initial reflection on patient care What patients have I seen where genetics/genomics has been involved in their conditions? How confident am I that I am able to recognise situations where genetic risk may arise? How can I improve my knowledge to be more aware of the significance of genetic/genomic factors for my particular patient group? Would I know what questions to ask to assess whether genetic factors contribute to a patient’s care and how does this make me feel? How can I better support patients in my practice who have or are at risk of genetic conditions? How confident do I feel about being able to find what resources are available to me?
BOX 3 Case study of a staff nurse involved in delivering genetic health care A staff nurse on a medical ward was caring for Jane, who was admitted with palpitations. Jane was anxious as she explained that her sister had died suddenly at the age of 28 and that her grandfather had died at the age of 40 at the wheel of a car – both deaths remained unexplained. The nurse thought that this was unusual, but also recognised that she was not able to deal with the concern herself. After discussing the case with a medical colleague, she was made aware that there was a new inherited cardiac conditions (ICC) service in her region. With Jane’s consent, the ICC nurse arranged to come to the ward and, through analysis of the family tree, identified that Jane and other family members may be at high risk of sudden cardiac death. The ICC nurse was able to offer information, genetic testing and long-term support for Jane’s family. The staff nurse reflected that she was caring for patients with genetic health needs in her daily practice and signed up for the teaching session that the ICC nurse was planning for the following month.
40 december 4 :: vol 28 no 14 :: 2013
Over the past few years, new roles have developed encompassing genetic knowledge. There is a relatively new role of genetic counsellor, which requires undertaking a formal masters level training pathway and voluntary registration with the Genetic Counsellor Registration Board. Some people who become genetic counsellors are nurses, while others have a science or social science background. Registered genetic counsellors are often linked to regional clinical genetics services or disease-specific specialties. In parallel with the growth of the genetic counselling profession, nurses who wish to remain within their own specialty can gain knowledge in genetics (often through masters level modules) in their discipline and can be employed as specialist genetic nurses or nurse practitioners, for example in diabetes, haematology, cardiac care and cancer care. Since genetics is identified as playing an important role in disease causation, these nurses are ideally placed to identify and counsel patients in their specialties and in accordance with their roles and levels of responsibility. The British Heart Foundation funded the creation of a number of cardiac genetic nurse posts across the country, which have been evaluated favourably (Burton et al 2010). However, there have been obstacles, such as uncertain funding and lack of management
BOX 4 Case study of a midwife involved in delivering genetic health care Pam’s first child was born with Down’s syndrome and she could not remember the advice given to her at the time. During her second pregnancy, she asked at her booking appointment (at ten weeks of pregnancy): ‘What is the chance that I could have another baby with Down’s syndrome?’. The midwife discussed the screening tests currently available, but also referred Pam to an obstetrician, as she did not know how to answer the concern accurately. The paediatric notes showed that Pam’s first child has translocation Down’s syndrome, which is more unusual than trisomy Down’s syndrome. Translocations can be associated with a high risk of recurrence and blood serum screening tests may not pick this up (Newton 2004). On reflection, the midwife realised that she did not have the confidence to answer the concern, but did feel able to discuss this with a colleague. If she had lacked this awareness or confidence, she could have provided false reassurance to the patient. She decided to find out more about chromosome translocations and their recurrence risk as part of her professional development. Pam decided to have a chorionic villus sampling test at 11 weeks and was told one week later that her baby did not have Down’s syndrome.
© NURSING STANDARD / RCN PUBLISHING
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
support, to the development of these new roles (Martin et al 2009, Burton 2011). The Association of Genetic Nurses and Counsellors (www.agnc.org.uk) is an inclusive society that aims to provide a forum where practitioners working with genetic information can share ideas and develop their knowledge base through an annual conference and email forum. There are also other professional support organisations in the UK which provide guidance, such as the British Society for Genetic Medicine (www.bsgm.org.uk), the Cancer Genetics Group (www.ukcgg.org) and the Society for Genomics Policy and Population Health (www.sgpph.org.uk). The GenRes group (www.bsgm.org.uk/geneticshealthcare-research/genres) represents and supports genetic nurses, counsellors and research co-ordinators involved in genetics portfolio research.
Achieving this competency All nurses need to reflect on their practice in terms of their knowledge of genetics and genomics and its relevance to their patients. If, through knowledge of the genetic competencies, a nurse believes a patient may benefit from genetic information, then most of the 23 regional genetics services will have an informal enquiry system for healthcare professionals who are not sure whether referral to a genetics service is appropriate (Genetic Alliance 2013). The regional genetics service will also be a source of information regarding local guidelines and pathways for referral to other specialties, such as breast screening, cardiology or haematology. Depending on role and level of training, the nurse would perhaps be expected to identify and discuss concerns with an appropriate senior staff member rather than refer patients directly. In the past, patients tended not to be referred to regional genetics services by nurses or GPs because they believed this would incur an expense. However, the costs associated with clinical genetics referrals are funded by specialist commissioning arrangements. Two areas of the NMC (2008b) code of practice are crucial to the role and responsibility of the nurse in relation to the genetic contribution to health. These are guidance related to skills and knowledge, and guidance relating to teamwork. The genetics competencies covered in this series complement The Code (NMC 2008b) and provide an educational framework, including practice indicators, to enable nurses to assess if they are safe and effective practitioners. Nurses could use the areas from The Code (NMC 2008b) outlined in Box 5 to help reflect on how they can meet the requirements of competency 6.
© NURSING STANDARD / RCN PUBLISHING
After reading this article, a nurse may be motivated to ascertain whether he or she is successfully reflecting on his or her practice using the questions in Box 6. If a nurse feels there are areas where he or she needs updating of skills or knowledge, this could be integrated into current professional practice by making use of the time provided during appraisal. These professional discussions provide opportunities to develop an action plan to be used as part of the nurse’s CPD portfolio. Nurses will have achieved competency 6 when they can demonstrate: Ongoing professional development in genetics and genomics within the CPD portfolio. An awareness of the boundaries of self and others involved in the provision of genetic and genomic health care.
BOX 5 Areas of the Nursing and Midwifery Council code of practice relevant to competency 6 Keep your skills and knowledge up to date: You must have the knowledge and skills for safe and effective practice when working without direct supervision. You must recognise and work within the limits of your competence. You must keep your knowledge and skills up to date throughout your working life. You must take part in appropriate learning and practice activities that maintain and develop your competence and performance. Work effectively as part of a team: You must work co-operatively within teams and respect the skills, expertise and contributions of your colleagues. You must be willing to share your skills and experience for the benefit of your colleagues. You must consult and take advice from colleagues when appropriate. You must treat your colleagues fairly and without discrimination. You must make a referral to another practitioner when it is in the best interests of someone in your care. (Nursing and Midwifery Council 2008b)
BOX 6 Examples of reflective questions to identify successful practice Do I think that my current knowledge base around genetic and genomic health care is adequate for my role? How could I access courses, reading and/or online tutorials as part of continuing professional development to improve my knowledge? Do I feel I am able to answer patients’ concerns and do I know the address of the regional genetics service in my geographical area? Have I seen a patient recently who, on reflection, could have benefited from referral to genetics services? Is there a lead clinician in my specialty who is interested in genetics or local referral pathways or guidelines? Are there any nurses specialising in genetics related to specific conditions in my local area?
december 4 :: vol 28 no 14 :: 2013 41
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Art & science competency standards: 6 An ability to enhance patient care through working collaboratively with other service providers. Regional genetics services and nurses specialising in the genetics of specific conditions, rely on the nursing community to make timely and appropriate referrals, and to provide continuing support and care to patients and families at risk of or who have genetic conditions.
Further information Nurses should reflect on their practice and examine what genetic influences could be present in diagnosing a condition or maintaining the health of their patients and families (National Genetics
and Genomics Education Centre 2013). Although more detail on information sources is given in the next article in this series, Genetics for Healthcare Professionals: A Lifestage Approach (Skirton and Patch 2002) is a useful resource, providing quiz sections to test the healthcare practitioner’s knowledge after each chapter. The National Genetics and Genomics Education Centre (www.geneticseducation.nhs.uk) provides information on learning about and teaching of core concepts in genetics and genomics. This site provides credible and practice-specific advice for nurses on assessing their knowledge level, how to approach patients for family history information, and advice regarding their role and practice, including links to specialist services. There is also
References Benjamin CM, Anionwu EN, Kristoffersson U et al (2009) Educational priorities and current involvement in genetic practice: a survey of midwives in the Netherlands, UK and Sweden. Midwifery. 25, 5, 483-499. Burton H (2011) Genetics and Mainstream Medicine: Service Development and Integration. PHG Foundation, Cambridge. Burton H, Alberg C, Hall A, Sagoo GS, Stewart A; Inherited Cardiovascular Conditions Services (2010) Inherited cardiovascular conditions: the challenges of genomic medicine. Heart. 96, 6, 474-476. Department of Health (2008) Our Inheritance, Our Future: Realising
the Potential of Genetics in the NHS. Progress Review. The Stationery Office, London. Genetic Alliance UK (2013) NHS Genetic Services in the UK. geneticalliance.org.uk/services.htm (Last accessed: November 19 2013.) Genetic Interest Group (2008) The Family Route Map Project: Finding A Way Through the Maze. geneticalliance.org.uk/ docs/FRMfinalReport.pdf (Last accessed: November 13 2013.) Kirk M, McDonald K, Anstey S, Longley M (2003) Fit for Practice in the Genetics Era. A Competence Based Education Framework for Nurses, Midwives and Health Visitors. University of Glamorgan, Pontypridd.
42 december 4 :: vol 28 no 14 :: 2013
Kirk M, Campalani S, Doris F et al (2011) Genetics/Genomics in Nursing and Midwifery: Task and Finish Group Report to the Nursing and Midwifery Professional Advisory Board. tinyurl. com/ojc29sq (Last accessed: November 19 2013.)
Metcalfe A, Haydon J, Bennett C, Farndon P (2008) Midwives’ view of the importance of genetics and their confidence with genetic activities in clinical practice: implications for the delivery of genetics education. Journal of Clinical Nursing. 17, 4, 519-530.
Kirk M, Tonkin E, Skirton H (2013) An iterative consensus-building approach to revising a genetics/genomics competency framework for nurse education in the UK. Journal of Advanced Nursing. Doi: 10.1111/jan.12207.
National Genetics and Genomics Education Centre (2009) How is Genetics Relevant to My Role? tiny.cc/genetics_ factsheet (Last assessed: November 19 2013.)
Martin G, Currie G, Finn R (2009) Bringing genetics into primary care: findings from a national evaluation of pilots in England. Journal of Health Services Research and Policy. 14, 4, 204-211.
National Genetics and Genomics Education Centre (2013) Genetics in Your Clinical Practice. www.geneticseducation.nhs.uk/ downloads/0065Genetics_in_your_ Clinical_Practice.pdf (Last assessed: November 19 2013.)
© NURSING STANDARD / RCN PUBLISHING
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
a tool available enabling healthcare practitioners to identify personal learning needs and document a development plan, which could be used as a prompt to discussion at an annual appraisal or review, as could the factsheet How is Genetics Relevant to My Role? (National Genetics and Genomics Education Centre 2009).
Conclusion Scientific advances in genetic and genomics enable healthcare practitioners to provide specific diagnostic information and treatments that are tailored at an individual patient level. This requires nurses to be aware of the professional need to keep up to date in this rapidly changing
National Nursing Research Unit (2008) Policy+ Review: A Collection of 35 Issues of Policy+ to Mark the 35th Anniversary of the National Nursing Research Unit. www.kcl.ac.uk/nursing/research/ nnru/publications/Policy-plusReview.pdf (Last assessed: November 19 2013.) Newton R (2004) The Down’s Syndrome Handbook: A Practical Guide for Parents and Carers. Random House, London.
area and to acknowledge the limits of their knowledge. There is also a need to recognise that patients could have a genetic condition, to understand the role and responsibilities of the nurse, and to refer or seek advice on behalf of patients. This article has provided techniques to help improve nurses’ awareness of genetics and genomics health care and to recognise the issues that are relevant to their area of practice NS Acknowledgement Thanks to Maggie Kirk, professor of genetics education, Genomics Policy Unit, Faculty of Life Sciences and Education, University of South Wales, for her guidance and contribution in co-ordinating and developing this series.
of Conduct, Performance and Ethics for Nurses and Midwives. NMC, London. Nursing and Midwifery Council (2010) Standards for Pre-Registration Nursing ducation. NMC, London. Oelofsen N (2012) Using reflective practice in frontline nursing. Nursing Times. 108, 24, 22-24.
Nursing and Midwifery Council (2008a) Statistical Analysis of the Register 1 April 2007 to 31 March 2008. tiny.cc/analysis_2007_2008 (Last assessed: November 19 2013.)
Rare Disease UK (2011) ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ – Summary of the Report. www. raredisease.org.uk/documents/ improving-lives-summary.pdf (Last assessed: November 19 2013.)
Nursing and Midwifery Council (2008b) The Code: Standards
Skirton H, Patch C (2002) Genetics for Healthcare Professionals: A
© NURSING STANDARD / RCN PUBLISHING
Lifestage Approach. BIOS Scientific Publishers, Oxford. Taylor BJ (2006) Reflective Practice: A Guide for Nurses and Midwives. Second edition. Open University Press, Maidenhead. Telling Stories: Understanding Real Life Genetics (2010a) ‘That Gene Link Being Identified is Probably Bigger than Any Cancer.’ www.tellingstories. nhs.uk/stories.asp?id=100 (Last accessed: November 19 2013.) Telling Stories: Understanding Real Life Genetics (2010b) Turner Syndrome is Just A Small Part of Who I Am. www. tellingstories.nhs.uk/stories. asp?id=60 (Last accessed: November 19 2013.)
Telling Stories: Understanding Real Life Genetics (2011a) ‘Whatever Happens, You Will Still Be You’. www.tellingstories.nhs.uk/ stories.asp?id=95 (Last accessed: November 19 2013.) Telling Stories: Understanding Real Life Genetics (2011b) ‘I Look Back Now and Think He’s Done So Well’ – A Mother’s Account. www. tellingstories.nhs.uk/stories. asp?id=96 (Last accessed: November 19 2013.) UK Health Departments (2012) Consultation on the United Kingdom Plan for Rare Diseases: February 2012. www.gov.uk/government/ uploads/system/uploads/ attachment_data/file/215141/ dh_132883.pdf (Last accessed: November 19 2013.)
december 4 :: vol 28 no 14 :: 2013 43
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 22, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
