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A proposed set of learning outcomes for genetic competency in nursing and midwifery

H. Skirton

School of Nursing, Acute and Community Care, University of Plymouth, Drake Circus, Plymouth, Devon. UK. PL4 8AA

K.A. Gresty

School of Biological Sciences, University of Plymouth, Drake Circus, Plymouth, Devon. UK. PL4 8AA

G. Green

School of Nursing, Acute and Community Care, University of Plymouth, Drake Circus, Plymouth, Devon. UK. PL4 8AA

A.J. Evenden

School of Biological Sciences, University of Plymouth, Drake Circus, Plymouth, Devon. UK. PL4 8AA

Abstract

Genetics and genomics are increasingly being used as tools for diagnosis, management and treatment of a range of common conditions, necessitating the development of competence in the field of genomics/genetics by healthcare practitioners. Increasing the amount of genetics in the nursing curriculum appears to have been unsuccessful, possibly due to the difficulty of inserting more material into the curriculum and the perception that it is not relevant to mainstream healthcare. The challenge of providing genetics education to a range of pre-registration and post-registration health professionals was addressed by the GeneSense multi-disciplinary team. An online education resource was produced with information on the scientific, clinical, ethical, social and psychological aspects of genetic healthcare based on a case study approach. To make the website learning activity meaningful and measurable, a set of learning outcomes was required. Using the genetics competencies previously developed by other authors, a set of learning outcomes in relation to each competency was developed. These act as a focus for learner engagement specifically with the GeneSense resource, as well as in a broader educational context. The suggested outcomes are presented here and further discussion by stakeholders is invited.

Background

The development of the role of specialist genetics nurses and genetic counsellors has necessitated prescribed routes for training and education of those practitioners. Educational recommendations for specialist nurses in the United Kingdom were first published by the Association of Genetic and Nurse Counsellors (AGNC) Education Working Group [1]. In the same year, the International Society of Nurses in Genetics (ISONG) published a document detailing the scope of practice of nurses working in specialist genetics in the USA [2]. In an increasing number of countries, the practice of non-medical genetics healthcare specialists is being controlled by programmes involving an evaluation of competence and registration or credentialing [3, 4, and 5]. However, advances in genetics knowledge and use of technology has enabled the focus of genetic healthcare to shift from the rare inherited diseases to a much broader field, encompassing more of the common diseases [6]. This shift has prompted government initiatives to ensure that citizens have access to new developments in healthcare based on genetics. In the United Kingdom, the a White paper ‘Our Inheritance – Our Future’ [7] set out the Government’s strategy for ensuring genetic information and technology were effectively utilised in mainstream healthcare, while the Surgeon General’s family history initiative in the United States [8] has similarly raised the profile of genetics in that country. However, the success of these and other initiatives depends upon the ability of healthcare practitioners to understand and utilise genetics information for the benefit of individuals and families with whom they have contact.

Development of the competency framework

Through a series of related research projects, the Genomics Policy Unit, led by Maggie Kirk, established the need to take a number of steps to ensure that nurses, midwives and health visitors in the UK were equipped to deal with the ‘new genetics’, a term that was used to denote the shift in genetic healthcare from specialist to mainstream applications. The recommendations of the Expert Advisory Panel of stakeholders convened to discuss nursing education in genetics needs; which included reviewing bioscience and genetics content in the nursing curriculum, raising the profile of genetics in nursing to ensure nurses were aware of the relevance of genetics to nursing care and developing effective teaching resources [9]. Work by Kirk et al. [10] with key stakeholders in clinical care, professional education and statutory bodies resulted in an agreement on a number of genetic competencies for nurses, midwives and health visitors. These were mapped by the authors to the seven core competencies required for nursing practice as defined by the UK statutory body, the Nursing and Midwifery Council [11]. The Kirk et al. report [10] provides a firm foundation for achieving competency in genetics for healthcare professionals. However, for practical and educational use, the competencies need to be accompanied by a series of learning outcomes that enable assessment of each competency in an individual.

Reports by Burton [12, 13] based upon a series of national stakeholder workshops indicated that current genetics education of health professionals in the United Kingdom is patchy and that most non-specialist practitioners lack confidence in this subject area. Writing from the US perspective, Jenkins et al., [14] and Lea & Monsen [15] have argued the urgent need to ensure nurses are genetically literate . Despite the established requirement for nurses to understand genetic concepts in order to engage effectively in evidence-based clinical practice [16, 17], Kirk [18] and Lashley [19, 20] believe that genetics is underrepresented in most nurse education programmes. The issue of increasing the amount of genetics in the nursing curriculum has been discussed, but appears to have been largely unsuccessful due to the difficulty of inserting more material into an already crowded curriculum and possibly due the perception that it is not relevant to mainstream healthcare practice. It is proposed that in order to integrate and assess genetics-related content, a set of learning outcomes are needed that provide a focus for learning that is rooted in clinical practice and a basis for assessing whether or not the student has reached the required level of competence.

The challenge of providing genetics education to a range of pre-registration and post-registration health professionals was addressed by the GeneSense multi-disciplinary team. An online education resource was produced with information on the scientific, clinical, ethical, social and psychological aspects of genetic healthcare, based on a case study approach [21]. However, in order to promote active engagement with the resource and to make the website learning activity meaningful and measurable, a set of learning outcomes was required.

Defining the scope of the learning outcomes described in this paper

Seven separate genetics competencies were reported by (Kirk et al. [10] but individual learning outcomes for academic levels 1-3 were not defined within the scope of that project. Consequently, we decided to construct a full set of learning outcomes in relation to each competency, which could act as a focus for learner engagement specifically with the GeneSense resource as well as in a broader educational context. Courses offered in Higher Education in the UK are graded at levels 1 (Certificate), 2 (Diploma), 3 (Degree), 4 (Masters) and 5 (Doctoral). It was decide to provide appropriate learning outcomes for nurses and midwives who were studying at level 1, 2 or 3, as the Kirk et al. report [10] specified that the competencies defined were those that applied to nurses or midwives at the point of registration (Levels 2 or 3). The same outcomes would therefore not necessarily be applicable to those students who were studying for Higher Degrees and these should be addressed separately.

Defining the learning outcomes

The development of the outcomes was informed by the combined and complementary backgrounds of the GeneSense team members, who have experience in health professional education, delivery of clinical healthcare in a range of settings and genetic counselling experience. The outcomes were initially developed using the report by Kirk et al. [10] as a basis for registration level competency. We referred to the publications by Gosling and Moon [22] and also Moon [23] to ensure that the learning outcomes we constructed were progressive, testable and appropriate to each academic level [24, 25]. The learning outcomes were developed by individual team members and were subsequently verified and edited using an iterative process that involved group discussion and consensus. The proposed genetic learning outcomes were also compared with outcomes for our own University modules, currently offered as part of diploma and degree courses for nurses and midwives, to ensure validity and consistency. Appropriate learning outcomes for learners at Levels 1-3 are defined in Table i1), providing a focus for both learning and assessment for healthcare practitioners studying at each of these levels. This enables both Diploma and Graduate students to achieve appropriate standards prior to registration.

Active progression from Level 1 to Level 3 can be demonstrated; with outcomes for Level 1 students focussed on creating an awareness of genetic issues in the practitioner, while Level 3 students are expected to participate actively in the provision of genetic healthcare (for example by taking a family history or responding appropriately to the client’s genetic concerns).

The need for further development and discussion

We present these outcomes to stimulate further discussion and educational development. While we have considerable expertise and experience in relevant academic and healthcare settings, we are keen to engage in dialogue with others who have an interest in this area of nurse and midwifery education and to refine the outcomes matrix for use across a range of pre-registration and post registration programmess.

One aspect that requires exploration by all stakeholders in genetics education for health professionals is the fit between the level of competency defined as appropriate for assessment in the educational sense, and levels of competency that can be aligned to clinical practice. It has to be remembered that in higher education, students are encouraged to develop skills in searching for information, but the nature of an assessment requires that it tests the student’s knowledge and skills at a particular point in time. Competencies for practice are concerned with ongoing ability to perform roles. It is our opinion that the outcomes for Level 1 are useful as a basis for development of the student but are not sufficient for a registered practitioner. As many practitioners in nursing and midwifery are eligible to register after undertaking a course at Level 2, we suggest that it is appropriate to require registered practitioners in mainstream healthcare to develop genetic competencies using the outcomes suggested for Level 2. However, where the practitioner requires some specialist genetics knowledge to perform routine healthcare in a specific setting (such as foetal medicine, familial cancer clinics or haemophilia care centres), then the outcomes for Level 3 are appropriate. In those cases, it is imperative that competency is maintained beyond the educational course by means of practical observation, experience and continuing professional development.

Thus far, the project has not addressed the needs of other allied health professionals who require development of competence in genetics. However, we have constructed a series of relevant case studies that facilitate this process [21]. Clearly, further collaborative work in this area is required in conjunction with a wider evaluation of the GeneSense resource and learning outcomes.

Conclusion

The GeneSense project has stimulated the development of a set of learning outcomes to support the development of competence in genetics healthcare for nurses and midwives. However, these outcomes should be reviewed and debated by relevant stakeholders before they can be generally adopted for use across the United Kingdom and potentially further afield.

Acknowledgements

We would like to thank Deborah Cotton and Andrew Hannan for critical comments on earlier drafts of this manuscript and also the University of Plymouth for providing Teaching Fellowship funding to support this project.

References

1. Skirton, H., Barnes, C., Guilbert, P. et al. Recommendations for education and training of genetic nurses and counsellors in the United Kingdom. J. Med. Genet. 1998; 35:410-2.

2. ISONG, International Society of Nurses in Genetics, Inc. Statement on the scope and standards of genetics clinical nursing practice. Washington DC: American Nurses Association. 1998.

3. Cook, S. S., Kase, R., Middelton et al. Portfolio evaluation for professional competence: Credentialing in genetics for nurses. J. Prof. Nurs. 2003; 19:85-90.

4. Skirton, H., Kerzin-Storrar, L., Patch, C. et al. Genetic counsellors: A registration system to assure competence in practice in the United Kingdom. Commun. Genet. 2003; 6: 182-3.

5. Human Genetics Society of Australasia. Certification in Genetic Counselling http://www.hgsa.com.au / Accessed 14 September, 2005.

6. Guttmacher, A.E. & Collins, F.S. Welcome to the genomic era. N. Engl. J. Med. 2003; 349(10):996-8.

7. Department of Health. "Our inheritance – our future". Realising the potential of genetics in the NHS. Genetics White Paper. 2003.

8. U.S. Surgeon General's Family History Initiative. URL http://www.hhs.gov/familyhistory/

Accessed 11 November, 2005.

9. Kirk, M. Nurse education and the new Genetics – Preparing the Practitioners of the Future. A Report of an Expert Advisory Panel. ISBN 1-84054-0021. 1999.

10. Kirk M, McDonald K, Longley M. et al. Fit for Practice in the Genetics Era: A competence based education framework for nurses, midwives and health visitors. Pontypridd, University of Glamorgan. 2003.

11. Nursing & Midwifery Council. Code of Professional Conduct. London, NMC. 2002.

12. Burton, H. Education in Genetics for Health Professionals. Report to the Wellcome Trust. Public Health Genetics Unit. 2002.

13. Burton, H. Addressing Genetics, Delivering Health. Wellcome Report for the Department of Health. Public Health Genetics Unit. 2003.

14. Jenkins, J., Grady, P.A. & Collins, F.S. Nurses and the genomic revolution. J. Nurs. Schol. 2005; 37(2):98-101.

15. Lea, D.H. & Monsen, R.B. Preparing nurses for a 21st century role in genomics-based health care. Nurse Edu. Perspect. 2003; 24(2):75-80.

16. Donaldson, S.K. Genetic research and knowledge in the discipline of nursing. Biol. Res. Nurs. 1999; 1(2):90-99.

17. Cashion, A.K., Driscoll, C.J. & Sabek, O. Emerging genetic technologies in clinical and research settings. Biol. Res. Nurs. 2004; 5(3):159-167

18. Kirk, M. Preparing for the future: the status of genetics education in diploma-level training courses for nurses in the UK. Nurse Edu. Today. 1999; 19 107-115

19. Lashley, F. Integrating genetics content in undergraduate nursing programmes. Biol. Res. Nurs. 1999; 1(2):113-118

20. Lashley, F. Genetics in Nursing Education. Nurs. Clin. North Am. 2000; 35(3):795-805

21 . GeneSense. Genetics for Healthcare Professionals. Online resource http://www.genesense.org.uk  (Date accessed 26/9/05)

22. Gosling, D. & Moon, J. How to use learning outcomes and assessment criteria. 2nd Edition, SEEC Publications. 2002.

23. Moon, J. The module and programme development handbook. Kogan Page. 2002.

24. SEEC. Credit Level Descriptors. Published by Southern England Consortium for Credit Accumulation and Transfer (SEEC). 2001.

25. Moon, J. How to Use Level Descriptors. Published by Southern England Consortium for Credit Accumulation and Transfer (SEEC). 2002.

Table i. Genetic competency framework with learning outcomes at three H.E levels.

Competence

Level 1 Outcomes

Level 2 Outcomes

Level 3 Outcomes

1. Identify clients who might benefit from genetic information and services.

1.1.1 Outline the relevance of a three generation family history in relation to assessing genetic health risk.

1.1.2 Describe basic patterns of biological inheritance and their variation in families and populations.

1.1.3 List resources available for clients and professionals seeking genetic information.

1.1.4 Identify the roles of the specialist genetics services and the referral pathway for access to genetics services.

1.2.1 Acquire and record accurate information for the construction of a three generation family history to assess genetic health risk.

1.2.2 Explore significant family history to assess genetic risk of altered health states.

1.2.3 Distinguish patterns of biological inheritance and their variation in families and populations.

1.2.4 Utilise relevant genetic information resources to inform practice.

1.2.5 Discuss the roles of the specialist genetics services and the referral pathway for appropriate patients/clients.

 

1.3.1 Construct a three generation family history for the process of assessing genetic health risk.

1.3.2 Appraise significant family history to assess genetic risk of altered health states.

1.3.3 Differentiate patterns of biological inheritance & communicate how these may vary in families and populations.

1.3.4 Use and evaluate relevant genetic information resources to inform practice.

1.3.5 Explain and communicate the roles of the specialist genetics services and the referral pathway for appropriate patients/clients.

2. Appreciate the importance of sensitivity in tailoring genetic information and services to clients' culture, knowledge and language

2.1.1 Recognise how communication of genetics issues should take into account the client’s level of understanding.

2.1.2 Outline how a client’s cultural, ethnic and religious background may influence their use of genetic information and services.

 

2.2.1 Demonstrate the use of appropriate communication skills in relation to the client’s level of understanding of genetics issues.

2.2.2 Discuss the impact of culture, ethnicity and religion on a client’s potential use of genetic information and services.

2.3.1 Effectively communicate genetic issues at a client’s level of understanding.

2.3.2 Critically evaluate the significance of culture, ethnicity and religion on a client’s potential use of genetic information and services.

3. Uphold the rights of all clients to informed decision making and voluntary action.

3. Uphold the rights of all clients to informed decision making and voluntary action.

3.1.1 Identify past and potential future misuse of genetic information.

3.1.2 Explain how own beliefs and values can influence client care.

3.1.3 Recognise the rights of all individuals to informed decision making and voluntary action.

3.2.1 Discuss how the misuse of genetic information could potentially influence a client’s ability to make an informed decision and act voluntarily.

3.2.2 Explore how personal values and beliefs in relation to ethical, cultural, religious and ethnic issues could impact on client care.

3.2.3 Facilitate clients’ rights to self determination through ensuring informed decision making and voluntary action.

3.2.4 Ensure that the particular needs of those unable to give informed consent in relation to accessing genetic information are addressed.

 

 

3.3.1 Appraise the impact of genetic information misuse on a client’s ability to make an informed decision and take voluntary action.

3.3.2 Critically evaluate the significance of personal values and beliefs in relation to ethical, cultural, religious and ethnic issues in the context of client care.

3.3.3 Uphold clients’ rights to self determination through ensuring informed decision making and voluntary action.

3.3.4 Advocate the particular needs of those unable to give informed consent in relation to accessing genetic information.

3.3.5 Analyse how the principle of a non directive approach underpins the process of genetic counselling, in facilitating client autonomy and empowerment.

4. Demonstrate knowledge and understanding of the role of genetic and other factors in maintaining health and in the manifestation, modification and prevention of disease expression to underpin effective practice.

4.1.1 Discuss how genetic factors affect health and disease.

4.1.2 Outline how disease expression throughout the life cycle is affected by both genetic & environmental factors.

 

 

4.2.1 Explore the role of genetic factors in altered health states using examples of common inherited conditions.

4.2.2 Explain with examples, how disease expression throughout the lifecycle may be influenced by genetic and environmental factors.

4.2.3 Discuss the influence of family genetic history on health education for both individuals and populations.

4.3.1 Evaluate the role of genetic factors in the human health-disease continuum.

4.3.2 Critically appraise the impact of genotype and environment throughout the human life cycle.

4.3.3 Promote the importance of family genetic history in health education.

4.3.4 Distinguish between genetic susceptibility and clinical manifestation of disease using basic concepts of risk.

5. Demonstrate a knowledge and understanding of the utility and limitations of genetic testing and information.

 

5.1.1 Explain the need for and maintain privacy and confidentiality when discussing and recording genetic information.

5.1.2 Discuss the process of genetic testing and its limitations.

5.2.1 Demonstrate confidentiality and maintain privacy when discussing and recording genetic information.

5.2.2 Explore potential risks, benefits and limitations of genetic testing and access to genetic information.

5.2.3 Debate the ethical, legal and social implications of genetic information for individuals and families.

5.2.4 Respond appropriately to enquiries about genetic concerns.

5.3.1 Ensure confidentiality and privacy when discussing and recording genetic information.

5.3.2 Evaluate potential risks, benefits and limitations of genetic testing and access to genetic information.

5.3.3 Critically appraise the ethical, legal and social implications of genetic information for individuals and families.

5.2.4 Respond appropriately and effectively to enquiries about genetic concerns. 

6. Recognise the limitation of one's own genetic expertise.

6.1.1 Recognise the limitations of their own genetic knowledge and practice.

6.1.2 Identify the role of the specialist genetics services and other agencies in providing appropriate patient/client care.

 

.

 

6.2.1 Explore own strengths and weaknesses in genetic knowledge and practice.

6.2.2 Explain how specialist genetic services and other agencies provide appropriate patient/client care.

6.2.3 Develop a collaborative approach to patient/client care in relation to genetics, with other statutory and voluntary organisations

6.3.1 Critically assess personal genetic knowledge and practice

6.3.2 Appraise the role of specialist genetic services and other agencies in the provision of appropriate patient/client care.

6.3.3 Promote a collaborative approach to enhance patient/client care in relation to genetics with other statutory and voluntary organisations. 

7. Obtain and communicate credible current information about genetics for self, clients and colleagues.

7.1.1 List resources available for accessing genetic information.

7.1.2 Recognise the importance of regularly updating genetics knowledge from reputable sources.

7.2.1 Employ a range of appropriate genetic information resources to inform practice.

7.2.2 Incorporate current genetic knowledge from reputable sources into practice.

7.2.3 Utilise reliable genetic evidence when communicating with patient/clients.

7.3.1 Critically appraise information and evidence from a range of reliable sources

7.3.2 Evaluate and incorporate current reputable genetic information into own practice.

7.3.3 Develop effective communication strategies to inform clients and colleagues of relevant genetic information.

This document was added to the Education-Line database on 22 March 2006