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Biomedical subjects

Heather Skirton

Publications and source records attributed to Heather Skirton.

14 recordsLinked to original sources
PubMed2006

Assessing the need for certainty in users of a clinical genetic health service.

AIM: This paper presents a study investigating the need for closure in users of a genetic health service. BACKGROUND: Genetic healthcare services are used by people who are concerned about a genetic condition in the family. Many clients expect information about the condition, risk assessment and discussion of options available to minimize the impact of the condition on the family. Some use the information to try to obtain certainty or cognitive closure. The psychological theory termed 'need for cognitive closure' explains individual differences in motivation to seek information. The tendency to seek closure can be measured by the Need for Closure Scale, which has five sub-scales: preference for order, preference for predictability, discomfort with ambiguity, decisiveness and closed-mindedness. METHODS: Clients who were referred to our genetic service in 1998 were approached before personal contact with staff of the genetic service. Fifty-two people completed the need for closure scale questionnaire. Six months after the genetic consultation, participants were asked to complete the questionnaire again (n = 45). The data were statistically analysed using Cronbach's alpha, paired t-tests and independent t-tests. RESULTS: There were no statistically significant differences in Need for Closure Scale scores in this cohort before and after the genetic consultation. Participants scored highly on the preference for order and discomfort with ambiguity sub-scales, but scores for closed-mindedness were low. Intolerance of ambiguity was statistically significantly higher in participants whose main concerns centred on their children. CONCLUSIONS: This psychological theory can help healthcare professionals to understand the motivation of clients who seek information from genetic services, and enhance understanding of those who avoid using the service. It cannot be assumed that additional knowledge is helpful to all clients, nor that knowledge of bad news is necessarily an adverse event if prior uncertainty has existed.

Adolescent↗
PubMed2006

Feasibility of combining e-health for patients with e-learning for students using synchronous technologies.

AIM: This paper is a report of a project to introduce and evaluate methods for using information and communication technologies to involve academic staff, students, and patients in a common synchronous e-learning environment. BACKGROUND: Although there is no strong evidence for this, there may be benefits in 'efficiency' and for patients and students from shared e-learning. Asynchronous e-learning methods in nursing education are well-established, but synchronous methods have received less attention. However, if feasible, because they are more akin to face-to-face contact, they may be more suitable for patients and may provide a quicker development path for e-learning. METHOD: We evaluated three synchronous technologies: (1) non-commercial satellite interactive television (TV); (2) Internet videoconferencing; and (3) webcasting, through feasibility studies of 'TV-style' panel discussions on health topics and seminars with interaction with viewers by e-mail, inter-site research meetings with face-to-face interaction, user surveys and literature reviews. RESULTS: Interactive satellite TV required the booking of rooms with specialized receiving equipment. This limited accessibility contributed to the high cost per participant. Videoconferencing proved acceptable for cross-site research meetings and is proposed for joint meetings for doctoral students with overseas centres but has the same access issues as interactive satellite TV. Webcasting is accessible to most users with Internet access and provides a feasible means of delivery of synchronous interactive material. Reported live webcasts have had audiences of thousands. Presentation formats: panel discussions with mixed patient-professional membership and mixed patient-professional audiences were acceptable to participants but engaging academic staff and students was problematic. This may be overcome with webcasting but there may still be barriers such as timetabling and students' concerns about learning in the same 'live' environment as patients. CONCLUSIONS: Limitations in accessibility have been demonstrated for both satellite broadcasts and videoconferencing. Webcasting proved the most acceptable way of supporting a common synchronous environment. Having identified a feasible synchronous method we can now investigate hypothesized benefits for staff, students, and patients of combined e-health e-learning.

Computer-Assisted Instruction↗
PubMed2006

A legacy for the children--attitudes of older adults in the United Kingdom to genetic testing.

AIM: The aim of this study was to assess understanding of genetics and attitudes towards genetic testing for clinical and research purposes in a group of older adults in the UK. BACKGROUND: Increasingly, genomics will have an impact on the diagnosis, prevention and treatment of common diseases and the prescription of drugs. The chance of being affected by a medical condition increases with age and therefore the use of genetic testing as part of general health-care practice has an impact on the older population. METHODS: Older adults were recruited to two focus groups (n=7 and n=10 respectively). Focus group discussions were guided by a series of questions and were audiotaped. The transcribed data were coded for significant statements, which were organized under thematic headings. RESULTS: The mean age of participants was 76 years. The main themes to emerge were: understanding, approach to genetic testing and conditions for testing. In this cohort, the older adults were largely unsure about the underlying scientific basis of genetics but were keen to learn more. While enhanced medical knowledge could enable preventive measures to be taken and so reduce suffering, it was acknowledged that for some people knowing the future could potentially cause anxiety and harm. Participants were wary about research being used to benefit private companies and voiced ethical concerns about potential coercion to be tested and the misuse of science. However, all participants had an altruistic approach that influenced their willingness to be tested to benefit others in their family or the wider community. Conditions for testing included provision of information about the purpose of testing and feedback on the results. CONCLUSIONS: Older adults are positive about the opportunities presented by genetic testing for clinical reasons and research, but need accurate information about the reasons for and implications of such testing. RELEVANCE TO CLINICAL PRACTICE: The results of this study confirm the need for nurses to be proactive in developing the genetic competencies required to detect potential familial disease, make appropriate referrals to genetic services and ensure informed consent is obtained for genetic testing.

Aged↗
PubMed2006

A historical comparison of the development of specialist genetic nursing in the United Kingdom and Japan.

This paper reports the development of specialist genetic nursing in the UK and Japan. Between 1970 and 1990, significant technical advances in genetic testing occurred. These advances offered many families affected by genetic conditions more choices in diagnostic, predictive, and prenatal testing. It was recognized that genetic testing could significantly alter the life of the family and that supportive health services were required to accompany such testing. Nurses began to offer specialist services in this setting, but considerable professional development was required to ensure practitioners were competent. In the UK, the profession grew slowly over several decades. Concern to establish minimum standards of practice in this new professional setting culminated in the establishment of a set of competencies and a formal registration process. By comparison, in Japan, developments in genetic nursing have occurred over a shorter period of time, but minimum standards of competence already have been agreed upon.

Clinical Competence↗
PubMed2006

Ethics, policy, and educational issues in genetic testing.

PURPOSE: Analyze ethics, public policy, and education issues that arise in the United States (US) and the United Kingdom (UK) when genomic information acquired as a result of genetic testing is introduced into healthcare services. ORGANIZING CONSTRUCT: Priorities in the Ethical, Legal, and Social Issues Research Program include privacy, integration of genetic services into clinical health care, and educational preparation of the nursing workforce. These constructs are used to examine health policies in the US and UK, and professional interactions of individuals and families with healthcare providers. FINDINGS: Individual, family, and societal goals may conflict with current healthcare practices and policies when genetic testing is done. Current health policies do not fully address these concerns. Unresolved issues include protection of privacy of individuals while considering genetic information needs of family members, determination of appropriate monitoring of genetic tests, addressing genetic healthcare discrepancies, and assuring appropriate nursing workforce preparation. CONCLUSIONS: Introduction of genetic testing into health care requires that providers are knowledgeable regarding ethical, policy, and practice issues in order to minimize risk for harm, protect the rights of individuals and families, and consider societal context in the management of genetic test results. Understanding of these issues is a component of genetic nursing competency that must be addressed at all levels of nursing education.

Confidentiality↗
PubMed2005

Development of an audit tool for genetic services.

Rapid growth in demand and altered professional roles have produced changes in the delivery of genetic services over the past decade, but these have not been rigorously evaluated because of the paucity of appropriate audit tools. The aim of this study was to use clients' accounts and factor analysis to develop a robust assessment and audit tool. Qualitative data abstracted from several published studies were used to generate a number of statements related to outcomes of genetic services. A total of 57 statements were incorporated into a questionnaire. The questionnaire was mailed to clients of the Wales genetic service (n = 133) who had completed their episode of care. Respondents were asked to rank each statement on a seven-point Likert type scale. Responses were subjected to factor analysis. A total of 97 anonymized responses were received (73% response rate). Six main factors were found to contribute to the outcome of the service from the client's perspective. These were labeled (i) enhanced understanding, (ii) positive psychological change, (iii) respect for autonomy, (iv) adaptation, (v) disequilibirium, and (vi) value of contact. The audit tool has now been refined for use in evaluating genetic services. Questions are included to investigate the six outcome areas shown to be relevant from the client's perspective. Data from the next phase of the study will be analyzed to validate the tool for use in both clinical audit and research contexts.

Data Collection↗
PubMed2005

Genomics in nursing education.

PURPOSE: To review international efforts to incorporate genetics content into nursing education curricula. ORGANIZING FRAMEWORK: A discussion of the progress in nursing education programs in selected countries to educate students for genomics-based health care. Information is based on review of the literature and curriculum change efforts by the authors. CONCLUSIONS: The lack of agreed-upon minimum competencies impedes efforts to educate nurses for genomics-based health care. Nationally and internationally recognized documents are useful for collaborative efforts to establish minimal competencies in knowledge, skills, and attitudes for nurses with basic and advanced education. Curriculum change that incorporates minimum competencies will require nursing faculty to improve their knowledge base in genomics-based health care. Partnerships among nurses in different countries are needed for successful genomics education programs for faculty.

Attitude of Health Personnel↗
PubMed2005

Huntington disease: a nursing perspective.

Huntington disease is a serious neurogenetic disease that affects the physical, cognitive, and psychiatric health of the patient, and has a significant impact on the social life of the family. Nurses play a vital role as health care providers and advocates for the patient with Huntington disease.

Genetic Testing↗
PubMed2003

Discovering and addressing the client's lay construct of genetic disease: an important aspect of genetic healthcare?

Genetic health care includes provision of information about (a) the cause of the condition, (b) recurrence risks, and (c) options for avoiding or treating the disease. This specialized aspect of health care may be offered by appropriately trained nurses, doctors or genetic counselors, but for brevity in this article the term "genetic counselor" will be used to describe any health professional providing such care. The accepted definitions of genetic counseling emphasize the transfer of information from the counselor to the client, to facilitate the client in making informed decisions (Ad Hoc Committee on Genetic Counseling, American Society of Human Genetics, 1975; Harper, 1998). However, it is important to recognize that both clients and counselors bring to the process of genetic counseling their own knowledge, values, and beliefs (Hallowell & Richards, 1997). The information provided during the genetic counseling process may not be novel to the client, and will be received against a background of the client's previous knowledge about the condition.

Adolescent↗
PubMedDate not supplied

Parental experience of a pediatric genetic referral.

OBJECTIVE: To describe the experience of parents whose child has been referred for possible genetic diagnosis. STUDY DESIGN AND METHODS: Phenomenology was used to examine the experience of 20 sets of parents. Interviews with parents were conducted on three occasions and the transcripts were subjected to coding and thematic analysis. RESULTS: Four themes were found: (1) impact of the child's condition on the family, (2) parental needs and motivation related to the referral, (3) psychological outcome of the referral for parents, and (4) psychosocial needs of parents in relation to the referral. Parents reported much stress, fear, and anxiety. Parents were motivated to accept the genetics referral to obtain information that could enhance the child's care or education and/or assist the parents to adjust psychologically to the child's condition, but preparatory information about the process of the clinical encounter was lacking. One of the worst stressors for parents was waiting for results. Communication with the professionals while they were waiting would have been helpful to them, as would the support to facilitate acceptance and adjustment to the situation. The impact of the child's condition on the family was powerful, altering the way in which the entire family functioned. Guilt about being the cause of the child's condition was expressed by mothers. CLINICAL IMPLICATIONS: Professional input before, during, and after the genetic referral is needed by families to enable them to access additional information, explanations, and psychological support. Nurses should know where to refer parents for community support groups as well as for professional support.

Adaptation, Psychological↗
PubMedDate not supplied

International collaboration in genetic nursing.

Collaboration across national borders presents unique challenges and opportunities. A desire to expand your understanding of healthcare issues, and a willingness to share time and intellectual resources generously, contribute to successful collaboration. This is especially useful in small but rapidly developing healthcare specialities, such as genetic nursing. By outlining the benefits of work between two nurses in the UK and the US, this article argues that specialist nurses can benefit from international collaboration where the partners share problem solving and mentoring on common professional issues.

Communication↗