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.