Competencies of genetic nursing practise in Japan: A comparison between basic and advanced levels

Authors


  • This article was originally published in Japanese in the Journal of Japan Academy of Nursing Science, 2004, 24 (2): 13–23.

Naoko Arimori, St Luke’s College of Nursing, Women’s Health and Midwifery, College 10-1, Akashi-cho, Chuo-ku, Tokyo 104-0044, Japan. Email: naoko-arimori@slcn.ac.jp

Abstract

Aim:  The purpose of this study was to identify the competencies of genetic nursing practise required for general and genetic nurses.

Methods:  We conducted a four-stage survey using a Delphi process. We conducted an interview with 27 nurses who were involved in genetics-related care and extracted 89 items in seven categories. In the second survey, we mailed a questionnaire to 20 experts in genetics. In the third and fourth surveys, we asked 491 health-care providers, including nurses and physicians, who were involved in genetics-related care and agreed to participate in the study at 113 institutions in 40 prefectures. The respondents were asked to choose one of three options in each of 89 items: “A: General nurse’s role”, “B: Genetic nurse’s role”, and “C: Not appropriate as the nurse’s role”. The data were collected from August 2000 to March 2001. There were 295 final subjects, and the response rate was 60%.

Results:  The competencies required for general nurses were identified as “living support”, “psychological support”, and “identification of the client’s wishes”, while those required for genetic nurses were “provision and exchange of accurate genetic information”, “referral to and collaboration with other organisations”, and “client support to understand disease.”

Conclusions:  These results suggest a direction for genetic nursing curricula. It is our challenge to incorporate genetics into the education programming.

INTRODUCTION

Recent advances in genetic medicine highlight the close relationship of genes to common diseases, such as cancer and lifestyle-related diseases, which have been linked to individual predisposition. It represents a paradigm shift in the way we view disease. As genetic or genomic information has become essential in every facet of health practise (Furuyama, 1998; Furuyama, 2000), in 2001 the Japan Society of Human Genetics established a formal board certification system of clinical medical geneticists (Fukushima, 2003). These clinical medical geneticists are expected to provide genetic services in all clinical areas.

Since 1996, when Shinshu University Hospital opened the first genetic clinic in Japan, >60 genetic clinics have been in service (Fukushima, 2002). In the practise of genetic medicine, a support system for ethical decision-making is essential (Fujimura, Fukui & Shiota, 1999) and a team-care approach is recommended (Nakagomi, Yokoo, Samura & Miharu, 2003). Genetic counseling in community health-care centers also has been expected to improve in terms of facilities and functions (Hirahara, 2002; Suzuki, 2002). Both consolidation of medical service provision and manpower supply have been started in all areas involving primary to tertiary medicine. In the USA, it was recognised at an early stage that genetics is deeply related to everyone’s life (Anderson, 2000) and nurses who are trained in medical genetics under the scope of formal genetic nursing practise (International Society of Nursing in Genetics [ISONG], 1998) and educational programs are now actively working.

Despite a paucity of educational programming to date in Japan (Mizoguchi, Yokoyama, Wada, Morita & Ando, 2000), genetic nursing practise has been discussed in each related clinical area, such as perinatal care and cancer (Yokoyama, Mizoguchi & Wada, 2001). Nurses are assigned to most of the genetic-specified clinics across the nation and are exploring a role in genetics-related care (Morita & Yokoyama, 2003; Nakagomi et al., 2002). The competencies of nursing practise in genetics-related care should be clarified. At the same time, basic and specialized educational programs in genetic nursing are urgently needed. The purpose of this study was to provide a consensus on the competencies of practise required for general nurses and genetic nurses in current genetics-related care.

METHODS

Research design

We used a Delphi process (Jones & Hunter, 2000), a consensus method, and conducted surveys by stages to determine consensus regarding the role of nurses in genetics-related care (Fig. 1).

Figure 1.

Steps of the consensus method.

Definition of terminology

Competencies of practise for general nurses: competencies required for all licensed nurses (general nurses/basic level), including genetic nurses.

Competencies of practise for genetic nurses: competencies required for genetic specialist nurses (genetic nurses/advanced level) when general nurses at the basic level have obtained professional knowledge and skills.

Subjects

The subjects of the study were nurses, physicians, psychologists, and social workers who were currently involved in genetics-related care.

The subjects of the first survey were 27 nurses with working experience in genetic counseling sections, perinatal care sections, pediatric or adult units, outpatient clinics serving for many patients with congenital and genetic disorders, and medical counseling or health education sections regarding genetics.

In the second survey, we targeted 20 members of the Japanese Society of Genetic Nursing (nurses, physicians, and psychologists) who had genetic knowledge and experience and who agreed to participate in the survey.

In the third and fourth surveys, we asked the following institutions to participate in the survey: (i) genetic counseling clinics in 47 prefectures all over the country that were included in the 1998 list of genetic counseling clinics; and (ii) a total of 200 institutions, such as children’s hospitals, university hospitals, and community health-care centers with medical counseling/health education sections, where many children with congenital disorders and patients with genetic disorders present. First, we asked directors and nurse managers to introduce us to potential health-care provider candidates who were involved in genetics-related care (physicians, nurses, psychologists, and social workers); we then obtained consent from the individuals. The final subjects were those who agreed to participate in our study.

Data collection

The first survey

We conducted an interview with 27 subjects. We collected the data by semistructured interviews and performed a content analysis. As a result, we extracted 64 items in seven categories for nursing practise.

The second survey

We developed a questionnaire based on the results of the first survey. We added additional inputs on practise from 20 members of the Japan Society of Human Genetics (nurses, physicians, and psychologists), then revised the wording of the sentences and the way that the options were presented in the questionnaire. After 25 items were added, the questionnaire had a total of 89 items. As it included items related to genetic nurses in the USA and the UK, we created three response categories: “A: General nurse’s role”, “B: Genetic nurse’s role”, and “C: Not appropriate as the nurse’s role”. Any of these could be chosen (Table 1).

Table 1.  Competencies of genetic nursing practise
CategoryContentNo. of items
I: Identification of client’s wishNurses have a responsibility to identify what clients and families want to know and their wishes 7
II: Client support to  understand diseaseNurses have a responsibility to support patients to accurately understand their disease’s characteristics, symptoms, and genetic features10
III: Psychological supportPatients with genetic and congenital disorders and their families are suffering psychologically in the diagnosis and treatment process and are on the way to gradually building a new lifestyle and values through experiencing fear for the future, deep sorrow, and despair; thus, nurses have a responsibility to support them15
IV: Provision and exchange of accurate genetic informationNurses have a responsibility to obtain accurate and new information while creating a close relationship with patients and families, and they also have a responsibility to exchange and share necessary information as one of the health-care team members15
V: Living supportNurses take part in patient care for symptoms and disorders in all living settings and thus have a role in supporting the patient’s daily living activities, as well as having a responsibility to give attentive support to people who experience such hardships through being with them in all living settings19
VI: Referral to and collaboration with other organisationsContinuous support is necessary if a fetal disorder is suspected by prenatal diagnosis, if genetic diagnosis of patients and families for family tumors is necessary or if careful testing is needed after genetic counseling in community health-care centers. Nurses have a responsibility to provide nursing care in collaboration with other disciplines and organisations based on the organisational scale and goals16
VII: Self-developmentNurses have a responsibility to continuously acquire new knowledge as a professional 7

The third survey

We distributed the questionnaire to 491 persons who agreed to participate in our study, then collected and analyzed them.

The fourth survey

Based on the results of the third survey, we were able to include the number of persons and the proportion of responses to each option of each item, as well as the comments for each item in the same questionnaire from the second stage for the subjects’ reference. The results were considered to represent a final consensus.

Analysis

We calculated the proportion of persons who chose each item, either A, B or C, in the 89 items, and ranked them using SPSS (Version 7.5; SPSS, Chicago, IL, USA).

Ethical considerations

The subjects were given a written explanation of the study and the subjects could choose to continue participation or withdraw from the study at any time. We paid close attention to privacy protection of the subjects.

RESULTS

Response rates for the third and fourth surveys

Of the subjects suggested by the directors and nurse managers of the target institutions, 491 persons agreed to participate in the study. There were 382 subjects in the third survey (response rate: 77.8%). Of these 382 people, 295 responded to the fourth survey (response rate: 77.2%). Of the 491 people in the third survey, 295 returned completed surveys, for a final response rate of 60.0%, with 200 of the 295 (67.8%) being nursing professionals (Table 2).

Table 2.  Occupation (results of the 4th survey)
OccupationN (%)
Nursing profession200 (67.8)
 Nurse 83
 Midwife 66
 Public health nurse 51
Physician 81 (27.5)
Other 14 (4.7)
Total295 (100.0)

Subjects’ background

As shown in Table 3, the subjects had an average work experience of 17 years and the average age was 41 years old. The proportion of health-care providers who received genetic education, however, was lower for nurses (32.4%) than for physicians (86.8%).

Table 3.  Subjects’ background
VariableN (%)SD
Men 66 (22)
Women215 (73)
Unknown 14 (5)
Average age (years) 41.99.7
Experience (years) 16.68.9
Genetic education
 Nurses
  No127 (67.6)
  Yes 61 (32.4)
  Total188
 Physicians
  No 10 (13.2)
  Yes 66 (86.8)
  Total 76

Competencies of genetic nursing practise

We removed the frames of the seven categories in the questionnaire and reclassified 89 items into “A: General nurse’s role”, “B: Genetic nurse’s role”, and “C: Not appropriate as the nurse’s role”, and then placed them in descending order in relation to who chose A, B, and C (%).

The differences between A and B ranged from 1–95%. As shown in Figure 2, we ranked them in descending order and compared them. We set 20% as a branch point because a drastic change in the difference between the items was seen at 20%. According to this criterion, we classified them into three groups. If the proportion of persons who replied “A” was more than 20% greater than that of those who replied “B”, such items were regarded as “A: Competencies of practise required for all nurses, including genetic nurses” (37 items). If the proportion of the persons who replied “B” was more than 20% greater than that of those who replied “A”, such items were regarded as “B: Competencies of practise required for genetic nurses” (40 items). The items for which > 50% of the persons replied “C” were regarded as “C: Not appropriate as the nurse’s role” (one item). There were 11 items for which the differences between A and B were small and difficult to differentiate.

Figure 2.

Differences between general and genetic nurses.

After the classification according to the criterion, eight group members studied the content validity regarding practise in “A” and “B”, along with the Japanese current situation. The category and item content was described as [] and < >, respectively.

Level of practise competency required for general nurses

As shown in Figure 3, thirty-seven items were chosen for the competencies required for general nurses. [V: living support] was the most common, and 16 items were chosen from Category V. Of these, 95% of the respondents chose <basic nursing assistance for inpatients to live their own daily life> and <easing symptoms associated with diseases during hospitalisation>. It was followed by 10 items of [III: psychological support]. Particularly, <understanding the characteristics, temperament, and personality of the client and family members and its application for nursing care>, <understanding and sympathising with the client’s strong anxiety>, and <being aware of the nurse’s own values and prejudice> were chosen by 80% of the respondents.

Figure 3.

Competencies of practise required for general nurses.

Furthermore, four items of [I: identification of client’s wish] were included. Of these, 90% of the respondents reported that <explanation of privacy protection> and <creating a comfortable environment for the client’s openness> were competencies of practise required for general nurses. There were three items from [VII: self-development] that were related to the improvement of individual skills, such as <mutual learning of interpersonal communication skills> and <better understanding about the client through sharing clinical experiences>.

Level of practise competency required for genetic nurses

As shown in Figure 4, forty items were chosen as competencies of practise required for genetic nurses. [IV: provision and exchange of accurate genetic information] was the most common, and 12 items were included. The highest were <a supplementary explanation is given in addition to the physician’s explanation on implications of different diagnoses>, <providing information not only of immediate concern but also for the future>, and <collaborating with relevant disciplines and sections after genetic counseling>. For collection of information from the patients, approximately 70% chose <constructing a pedigree> and <while protecting privacy, collecting additional necessary information for the pedigree> as competencies required for genetic nurses.

Figure 4.

Competencies of practise required for genetic nurses.

Next, 11 items were chosen from [VI: referral to and collaboration with other organisations]. <Providing requested counseling with a physician specialist for pregnancy in consanguineous marriage or family with genetic disease>, <taking a role of coordinator for collaborating with relevant sections in the hospital about the client>, and <educational activities on genetic counseling and genetics-related care of relevant professionals in the hospital and community> were the most chosen.

Moreover, there were seven items from [II: client support to understand disease]. The highest three items were <continuously recognising the client’s and family’s conditions by letters and telephone calls after the case conference>, <helping the client on how to ask questions of the physician if it is difficult>, and <helping the client to avoid generating and increasing fears when the client makes a decision of “don’t want to know the facts”>.

Of the competencies in [III: psychological support, chosen primarily by general nurses, three items, including <continuously support the client and family in the process of anxiety, perplexity, and psychological fluctuations in relation to the disease after genetic counseling, testing, and diagnosis to manage their feelings>, were chosen by 80% of the respondents. There were four items in [VII: self-development], mainly the content of information exchange with other disciplines.

Practise competencies that are not appropriate for nurses

Approximately 60% chose only the one item: <examining resources of living support to apply for medical benefit with social workers> as an inappropriate item for nurses.

Competencies of practise with little difference between general and genetic nurses

As shown in Figure 5, there were 11 items that were difficult to differentiate because the differences were very small between the general and genetic nurses. The most common category was [VI: referral to and collaboration with other organisations] and four items, such as <continuously supporting client’s anxiety and preparation for a new life after discharge in collaborating with outpatient staff> and <making a report to nurses in other organisations about symptoms, living level, and nursing-care services based on symptoms with patient’s permission> were included. There were two more items, <providing professional advice on symptom control> in [V: living support] and <accepting client’s and family’s feelings at explanation of testing and telling the diagnosis> in [III: psychological support].

Figure 5.

Competencies difficult to differentiate between general and genetic nurses.

DISCUSSION

Competencies of practise required for general nurses

Many of the highly ranked competencies required for general nurses were items related to [V: living support]. The current situation reflects the results that general nurses have already done <basic nursing assistance for inpatients to live their own daily life>, <planning and practise of care programs during hospitalisation in accordance with family’s wish>, and <easing symptoms associated with diseases during hospitalisation> for hospitalised patients and children with genetic (Mendel’s heredity disorders) and congenital disorders in practise (Kukinaka et al., 2003; Numakunai, Kiyota, Hamazaki & Nishino, 2000). At the basic level of practise competency that ISONG (1998) suggested, “health promotion and health maintenance” includes ensuring respect for the patient’s health beliefs. These results are consistent with those in the present study that the wishes of patients and families should be respected. Williams has pointed out the [management of genetic health problems] as one of the elements of genetic nursing and indicated that appropriate management of treatment, such as medication and chemotherapy, should be provided based on individual genetic features (Williams, 2001). With the introduction of tailor-made medicine in which the features of individual genes are related to the treatment policy (Ando, 2000), all the nurses will be expected to consider patients’ genetic predisposition when assisting them with daily living.

Next, many items of [III: psychological support] were chosen. Most of these items were related to the need for being close to patients and families who experience psychological shock and the uncertainty of patients with genetic and congenital disorders and their families in the process of creating new values, such as <understanding the characteristics, temperament, and personality of the client and family members and its application for nursing care>. Also, <being aware of the nurse’s own values and prejudice> was chosen as a necessary competency for providing care by understanding the patient’s experience.

Furthermore, <explanation of privacy protection> and <creating a comfortable environment for the client’s openness> of [I: identification of client’s wish] were related to the physical set-up of the institutions. Today, patient privacy is hardly protected in the present clinical settings because the patient’s story can be heard through a curtain in a counseling room. Considering the specific characteristics of genetics and having a place for patients to sit down and talk about genetics in a warm atmosphere is important (Chiyo, 2000).

Competencies of practise required for genetic nurses

The content chosen as the competencies required for genetic nurses was [IV: provision and exchange of accurate genetic information] aiming at accurate diagnosis and effective treatment. The competencies for providing essential information for decision-making regarding testing and treatment and support to help the client’s understanding of disease were chosen, and <a supplementary explanation is given in addition to the physician’s explanation on implications of different diagnoses> and <providing information not only of immediate concern but also for the future> were ranked higher. Genetics-related care is characterised by multiple specialties, thus the consultation competency for <collaborating with relevant disciplines and sections on the client’s treatment and testing with the client’s permission after genetic counseling> to develop a treatment policy is required for genetic nurses. Furthermore, genetic nurses are required to have competencies to construct a pedigree as <collecting information from patients> to assess potential genetic problems in the patient and family, and to determine whether genetic problems are present or not in the living of community residents and disease structures as risk assessment (Irie, 2000; Takase, 2001).

In the USA, helping patients to understand genetic information is a basic competency for all nurses (ISONG, 1998). Particularly, the assessment of client understanding of relevant information is emphasised as the most important responsibility for general and genetic nurses in all fields (Williams, 2001), which differs from the results of our study. Furthermore, to find cases with genetic problems (Jenkins, Dimond & Steinberg, 2001; Williams), to identify genetic risks in individuals, families, and communities (ISONG), and to provide genetic information (ISONG) are the basic-level competencies. In fact, nurses are trained to construct a pedigree across three generations (Williams, 2001).

In the USA, nurse practitioners play an independent role in the health-care system; in contrast, certified nurse specialists, certified by the Japanese Nursing Association, have not yet become well-established in Japan. It is necessary to define the competencies of genetic nursing, as well as the job descriptions and scope in clinical genetics.

As nurses work not only in hospitals, but also in communities and schools, all nurses encounter people who need genetic services in various settings (ISONG, 1998; Lea, Anderson & Monsen, 1998). The provision of genetic information and the detection of genetic problems are competencies needed for all nurses, though training in these skills is lacking in the current basic nursing education in Japan. Nurses are educated on how to establish interpersonal relationships and how to understand diseases and disorders related to genes in basic education. To link such knowledge to clinical genetics is necessary in the training for genetic nursing practise.

Nearly 90% of the respondents chose <providing requested counseling with a physician specialist for consanguineous marriage or family with genetic disease> from [VI: referral to and collaboration with other disciplines and organisations]. The case management for complicated health support also is listed as a competency required for genetic nurses by ISONG (ISONG, 1998). Also, <taking a role of coordinator for collaboration with relevant sections in the hospital about the client> is required as a consultation competency of genetic nurses, which is consistent with the results of our study.

As genetic nurses are able to be continuously involved in patient care, <continuously recognising the client’s and family’s conditions by letters and telephone calls after the case conference>, <helping the client on how to ask questions of the physician if it is difficult>, and <helping the client by possible measures including telephone call, visit, and letter based on the needs of follow-up> from [II: client support to understand disease] were chosen. <Continuously support the client and family in the process of anxiety, perplexity, and psychological fluctuations in relation to the disease after genetic counseling, testing, and diagnosis to manage their feelings> from [III: psychological support] was chosen as a competency required for genetic nurses. Although the support of patients’ and their families’ complicated decision-making is coming to be recognised as important from the nurse’s perspective (Tsuji, 2003; Tsujino, Tsukahara, Iino & Murakami, 2003), there is not a general consensus on how to support. At some institutions, health-care teams discuss the direction of care at a conference (Nakagomi et al., 2003).

In [VII: self-development] as professionals, general nurses required individual skills, including communication skills, while genetic nurses required professional competencies, such as information exchange with other disciplines and attendance of scientific conferences.

Competencies of practise with little differences between general and genetic nurses

The items with little differences between the general and genetic nurses included both elements related to general and genetic nursing practise within one expression. Thus, the respondents might have difficulties in differentiating <providing professional advice on symptom control> and <attending client’s and family’s visit and consultation based upon their request, and observing client and family not only by their language but also by expression and attitude> were chosen for the general nurse’s role because “symptom control methods” and “being with the client and family at the explanation of the results of the testing and observing the client and family responses” are already practised in care. However, if some new content like “professional advice” and “the results of the genetic testing” in the same item were included, these were chosen as the genetic nurse’s role. Therefore, the necessity of refinement of content expressions was suggested to avoid mixing the roles of both general and genetic nurses in one item.

Suggestions for genetic nursing education

These results suggest a direction for genetic nursing curricula. For general nurses, the knowledge of basic genetics should be enhanced to provide physical and psychosocial care by considering individual genetic features when nurses support the patient’s living environment and activities. In this study, the development of pedigrees and the collection of genetic information were required as the genetic nurse’s role to assess the necessary care, but these tasks are essential for all nurses. Knowledge of clinical genetics, genetic counseling skills, and consultation knowledge and skills for coordination with various organisations are required for genetic nurses to provide accurate genetic information and to help patients to understand their disease. In the present clinical system, perinatal, pediatric, and adult treatment are differentiated; however, it is our challenge to develop general and specific genetic nursing in the current systems.

CONCLUSION

The competencies required for general nurses were agreed to be [V: living support], [III: psychological support], and [I: identification of the client’s wish], while those required for genetic nurses were [IV: supply and exchange of accurate genetic information], [VI: referral to and collaboration with other organisations], and [II: client support to understand disease]. [VII: self-development] indicated the improvement of individual skills, including communication skills, for general nurses, but of professional skills, such as the exchange of opinions with other disciplines, for genetic nurses.

ACKNOWLEDGMENTS

We wish to acknowledge the participants who replied twice to the questionnaires. Funding support for this study was provided by a Grand-in-Aid for Scientific Research for 2003–2004 from the Ministry of Education, Culture, Sports, Science, and Technology of Japan (A[1] 12307059). A part of this study was presented at the 21st academic conference of the Japan Academy of Nursing Science.

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