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This qualitative study aimed to explore the lived experience of medical doctors in delivering cervical cancer screening in a city in Iraq. Methods: An applied grounded theory approach explored the reported experiences of doctors in the field. A purposive sample of 12 gynaecologists and one general practitioner (GP) working in two main hospitals participated: Semi‐structured interviews took place from June to September 2015. Thematic coding of data was peer reviewed and included participant reading of transcripts and translations from Arabic to English. Theory generation involved synthesis of a prior literature review and interview findings. Results: Gynaecologist and GP experiences showed overwhelming gaps in cervical cancer experience and screening. Iraqi women mainly presented for help with late‐stage cancer. Practical barriers included cultural stigma, low priority for women's health needs, lack of knowledgeable leadership and perceived shortage of adequately trained staff. Conclusion: There is an urgent need for culturally appropriate cervical cancer prevention policies and strategies in Iraq, focused on evidence‐based population‐based cervical screening to identify and prevent advanced cervical cancer among women. Regional educational initiatives should be encouraged and primary healthcare systems supported to undertake screening. [ABSTRACT FROM AUTHOR]

Population-based screening programs have resulted in minimizing mortality and morbidity from cervical cancer. The aim of this integrative review was to explore the factors influencing access of women from Western Asian and Middle Eastern Arab countries to cervical cancer screening. A systematic search for studies conducted in Arab countries in those regions, and published in English between January 2002 and January 2017, was undertaken. Thirteen papers were selected and subjected to quality appraisal. A three step analysis was used, which involved a summary of the evidence, analysis of both quantitative and qualitative data, and integration of the results in narrative form. Few population-based cervical cancer screening programs had been implemented in the relevant countries, with low knowledge of, and perceptions about, cervical screening among Arab women, the majority of whom are Muslim. Factors affecting the uptake of cervical cancer screening practices were the absence of organized, systematic programs, low screening knowledge among women, healthcare professionals' attitudes toward screening, pain and embarrassment, stigma, and sociocultural beliefs. Policy changes are urgently needed to promote population-based screening programs. Future research should address the promotion of culturally-sensitive strategies to enable better access of Arab Muslim women to cervical cancer screening. [ABSTRACT FROM AUTHOR]

Muenke syndrome constitutes the most common syndromic form of craniosynostosis, occurring in 1 in 30,000 live births. The phenotype is variable, ranging from no clinical findings to complex presentation. Facilitating reproductive decision making for couples at genetic risk of having a child with Muenke syndrome is an important aspect of genetic counselling. Prenatal genetic testing for Muenke syndrome is accurate; however the value of testing is uncertain with a variable phenotype. The purpose of this study was to explore attitudes towards prenatal testing in couples where one partner had tested positive for the Muenke mutation. We used a qualitative approach based on thematic analysis and collected data using individual semi-structured interviews with eight parents. Five key themes were: The Muenke journey; Impact and knowledge of diagnosis; Knowledge and attitude to prenatal testing; Stigma and sharing of information; and Information retention. Knowledge of Muenke syndrome and prenatal testing was poor. Genetic information was provided when treatment of their affected child was their paramount concern. Couples reported not sharing genetic information with family due to fear of stigmatisation. Couples cannot make reproductive decisions if lacking appropriate understanding of the choices: timely genetic counselling regarding prenatal testing is needed when relevant to them. [ABSTRACT FROM AUTHOR]

The number of pregnant women of advanced maternal age has increased worldwide. Women in this group have an increased chance of fetal abnormality. To explore Japanese women's experiences regarding maternal age-specific risks and prenatal testing, we conducted a descriptive qualitative study. Semi-structured interviews were conducted with 16 women aged 35 years or over who had given birth within the previous three months to a healthy, term infant. Thematic analysis of transcribed interview data was performed and three major themes were identified: inadequate understanding of genetic risks; insufficiently informed choice regarding prenatal testing; and need for more information from health professionals. Some participants were not aware of maternal age-specific risks to the fetus. Many took their cues from health professionals and did not raise the topic themselves, but would have considered prenatal testing if made aware of the risks. Nurses, midwives and other health professionals need to adequately inform pregnant women about the genetic risks to the fetus and offer testing at an appropriate stage early in the pregnancy. [ABSTRACT FROM AUTHOR]

Background: The development of non-invasive prenatal testing has increased accessibility of fetal testing. Companies are now advertising prenatal testing for aneuploidy via the Internet.Objectives: The aim of this systematic review of websites advertising non-invasive prenatal testing for aneuploidy was to explore the nature of the information being provided to potential users.Methods: We systematically searched two Internet search engines for relevant websites using the following terms: 'prenatal test', 'antenatal test', 'non-invasive test', 'noninvasive test', 'cell-free fetal DNA', 'cffDNA', 'Down syndrome test' or 'trisomy test'. We examined the first 200 websites identified through each search. Relevant web-based text was examined, and key topics were identified, tabulated and counted. To analyse the text further, we used thematic analysis.Main Results: Forty websites were identified. Whilst a number of sites provided balanced, accurate information, in the majority supporting evidence was not provided to underpin the information and there was inadequate information on the need for an invasive test to definitely diagnose aneuploidy.Conclusions: The information provided on many websites does not comply with professional recommendations. Guidelines are needed to ensure that companies offering prenatal testing via the Internet provide accurate and comprehensible information. [ABSTRACT FROM AUTHOR]

Prenatal screening tests can help to estimate the possibility of a pregnant woman having a baby with trisomy 21 ( Down syndrome). As these tests are optional, it is essential that women are provided with appropriate verbal and written information to enable them to make an informed choice. In this study, we assessed the content and quality of Down syndrome screening information leaflets used by health professionals to provide information to pregnant women in the UK (26 leaflets) and Thailand (11 leaflets). We collected leaflets from health institutions and the Internet, and compared the topics covered in each one against recommendations for patient information on this topic. We also assessed the quality of each leaflet using the DISCERN Genetics tool. While the quality-rating score of the UK leaflets was significantly higher than the Thai leaflets, none of the leaflets included all the recommended topics; some contained erroneous material. In both countries, the quality of information can be improved to provide accurate information to women and their partners, which is essential to ensure prospective parents can make informed choices during pregnancy. [ABSTRACT FROM AUTHOR]

This study provides an understanding of the experiences and perceptions of phlebotomy in people with infection who have venous damage related to injecting drug use with the aim of improving their care. Narrative interviews were conducted with 10 attendees of a phlebotomy service within an acute Trust in the south-west of England. The participants had hepatitis C infection and poor venous access due to current or former drug use. Interview audiotapes were analyzed, and the themes - conflict, emotional responses, the patient as expert, and offering solutions - were identified. In the context of this study, we discuss the difficulties associated with phlebotomy, which might explain why individuals with hepatitis C infection and venous damage disengage from health services and are less likely to undertake antiviral treatment. This research adds to the literature on phlebotomy for vulnerable groups, and recommends hepatitis C virus clinics within drug agencies, the need to review training and policy, and the development of 'phlebotomy passports' to enable continuity of care between services. [ABSTRACT FROM AUTHOR]

The article reports on dramatic growth which has been seen in the genetic counseling profession in the United Kingdom as a result of an increase in demand for genetic services, the development of a registration process for genetic counselors and improved professional standards for genetic counselors. A discussion of the educational and registration processes for genetic counselors, and of government funded training posts which are available for genetic counselors, is presented.

The aim of this study was to explore the views of parents and health professionals regarding informed decision making for antenatal screening for Down syndrome. This qualitative study was based on thematic analysis and conducted in England, where screening for Down syndrome is universally offered to all pregnant women. Four focus groups were held with pregnant women and/or their partners ( n = 22), and another four groups were held with health professionals who offer antenatal screening ( n = 22). Data were analyzed through coding of the transcribed focus group discussions and extraction of main themes. Extracted themes were: information overload, gaps in information, challenges in providing information and involvement of both parents in the decision. Parents and professionals believed that burdening parents with untimely information on a wide range of topics in the first trimester detracted from decision making about screening. Many parents also reported they were not sufficiently informed and wanted individualized discussion with a health professional. To ensure parents make informed decisions, information on screening should be provided at the appropriate time, with opportunity for personal discussion with a knowledgeable health professional. [ABSTRACT FROM AUTHOR]

Genetic counselling must be offered in the context of presymptomatic testing (PST) for severe late-onset diseases; however, effective genetic counselling is not well defined, and measurement tools that allow a systematic evaluation of genetic practice are still not available. The aims of this qualitative study were to (1) recognize relevant aspects across the whole process of genetic counselling in PST for late-onset neurodegenerative disorders that might indicate effective practice from the consultand's perspective; and (2) analyse aspects of current protocols of counselling that might be relevant for successful practice. We interviewed 22 consultands undergoing PST for late-onset neurological disorders (Huntington disease, spinocerebellar ataxias and familial amyloid polyneuropathy ATTRV30M) in the three major counselling services for these diseases in Portugal. The main themes emerging from the content analysis were (1) the consultand's general assessment of the PST process in genetic services; (2) appropriateness and adaptation of the protocol to the consultand's personal expectations and needs; and (3) consultand's experience of the decision-making process and the role of engagement and counselling skills of the counsellor. Participants also provided a set of recommendations and constructive criticisms relating to the length of the protocol, the time gap between consultations and the way results were delivered. These issues and the construction of the relationship between counsellor and counselee should be further investigated and used for the improvement of current protocols of counselling. [ABSTRACT FROM AUTHOR]

Social support has been associated with positive outcomes regarding the mothering experience, and professional interventions have therefore been developed in formal settings to promote this. An ethnographic approach was used to consider the subjective experiences of mothers attending a professionally-facilitated group for parents and children aged 0-4 years, focusing on relationships within the group and their importance within existing social networks. Qualitative data were collected from seven participants using interviews and participant observation. These were analyzed by the constant comparison method into codes, categories, and themes. Three themes emerged: past history, being a mother, and function of the group. To ensure mothers and children benefit from such groups, nurses who participate in developing and leading community interventions for mothers and their children need to be aware of the importance of maternal identity and the factors that can impact the relationships between mothers within group settings. [ABSTRACT FROM AUTHOR]

Non-invasive prenatal testing has been in clinical use for a decade; however, there is evidence that this technology will be more widely applied within the next few years. Guidance is therefore required to ensure that the procedure is offered in a way that is evidence based and ethically and clinically acceptable. We conducted a systematic review of the current relevant literature to ascertain the factors that should be considered when offering non-invasive prenatal testing in a clinical setting. We undertook a systematic search of relevant databases, journals and reference lists, and from an initial list of 298 potential papers, identified 11 that were directly relevant to the study. Original data were extracted and presented in a table, and the content of all papers was analysed and presented in narrative form. Four main themes emerged: perceived attributes of the test, regulation and ethical issues, non-invasive prenatal testing in practice and economic considerations. However, there was a basic difference in the approach of actual or potential service users, who were very positive about the benefits of the technology, compared with other research participants, who were concerned with the potential moral and ethical outcomes of using this testing method. Recommendations for the appropriate use of non-invasive prenatal testing are made. [ABSTRACT FROM AUTHOR]

Global trends in public health nursing ( PHN) suggest the value of community-based social research. However, it is not always clear how social research relationships may be of benefit to PHN or how such skills can best be learned and applied. To advance this understanding, we present a qualitative analysis of the development of social research relationships in PHN. Using a background literature review as a foundation, our qualitative mixed method strategy involved a comparative case-study analysis based on the authors' participant observation in two distinct postnatal group settings. Our findings suggest that participant observation facilitates the advancement of social research relationships through practitioner-research management of role conflict. Reflexivity and reciprocity is an emergent relational process, which relies upon a de-professionalization of the traditional PHN role. Conversely, social research relationships help build PHN capacity for family health needs assessment. Thus, we contend that the application of participant observation enables the development of social research relationships, which advance the practice of PHN in postnatal support settings. [ABSTRACT FROM AUTHOR]

The majority of people with degenerative neurological conditions are cared for within their own families. Cognitive impairment can be a significant and increasing symptom of these conditions. In this article we report how a team of experienced researchers carried out a meta-ethnography of qualitative research articles focusing on the impact of caring for a loved one with cognitive impairment. We followed the seven-step process outlined by Noblit and Hare. Synthesized findings from 31 papers suggest emotional impact is complex and uncertain and varies from day to day. The benefit of using meta-ethnography is that the results represent a larger sample size and a reinterpretation of multiple studies can hold greater application for practice. The results of this study offer an opportunity for nurses to be aware of both the positive and negative sides of caring and being cared for. This knowledge can be used to discuss with patients and carers how best to prepare for decreasing cognition and still maintain a worthwhile quality of life. [ABSTRACT FROM AUTHOR]

In the past, genetic services were delivered to a limited number of families with rare conditions. However, genomics is now being applied to both inherited and common diseases in a range of healthcare settings, and there is a greater need for nurses to understand the basic concepts of genetic health care. The aim of this cross-sectional survey was to explore the understanding and attitudes of Italian nurses toward genetic health care. A questionnaire was completed by 102 nurses and midwives (85% response rate). Of these, 61% believed that genetic counseling was only an informative and advisory process, and 53.9% could not specify to whom the counseling was aimed. When asked to identify nurses' role in genetic health care, 62% of the respondents believed they had no role, although 28% believed that nurses could provide information, support, and counseling. These findings indicate that nurses have only partial knowledge of the issues surrounding genetic health care. To prepare nurses for the post-genomic era, improved genetic education at the undergraduate and postgraduate levels is required. [ABSTRACT FROM AUTHOR]

The aim of this study was to develop an evidence-based psychosocial information booklet for parents of children without a specific diagnosis, many of whom are seen through the genetic clinic. A mixed methods approach was adopted involving four phases. The first two phases involving a systematic review and in-depth interviews are summarised briefly but reported in detail elsewhere. Phase 3 comprised: (1) a grey literature search to identify relevant literature and resources from other patient organizations; (2) drafting the booklet using themes identified through the previous phases; (3) piloting the booklet with eight professional and support group stakeholders and (4) piloting the booklet with 14 parents (from Phase 2) to ensure the information reflected their experiences. In Phase 4, we assessed satisfaction with the booklet through a questionnaire completed by 38 parents. The booklet was well accepted. The importance of providing the booklet at the beginning of the parental 'journey' was identified. We have developed an evidence-based information booklet to support parents via a rigorous mixed methods approach. This booklet meets a largely unmet psychosocial need and could be used in practice to support parents of children without a diagnosis. [ABSTRACT FROM AUTHOR]

Incidental findings arise when clinically relevant genetic information about a research participant or patient is identified outside the scope of the original research objective or diagnostic test being performed. These findings can relate to carrier status for a heritable condition, misattributed paternity or increased susceptibility to a medical condition. The decision whether to disclose these findings to the research subject or patient is underpinned by many ethical, moral, and potentially legal considerations. There is an urgent need for definitive guidelines for researchers and healthcare professionals. We performed a systematic review of the relevant literature concerning the disclosure of incidental findings, based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses recommendations, using the prescribed flowchart and checklist. At initial screening, 473 articles were retrieved. The inclusion and exclusion criteria aimed at obtaining data that were relevant and of sufficient quality were applied and a total of four relevant studies were identified, comprising 2,680 individual participants and 1,023 guidance documents. Major themes emerging from the included articles include patient autonomy, patient welfare, harmful secrets, and genetic literacy. The lack of relevant studies emphasizes the urgent need for empirical investigations into the disclosure or non-disclosure of genetic incidental findings, and the provision of guidelines to assist healthcare professionals and researchers. © 2012 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Genetic counselors may have an important role in helping the adolescent make an informed decision with regard to genetic testing and in helping them to adjust to genetic risk information. However, counseling techniques that are used with adults may not be always be suited to the adolescent population. Adolescence is a time of development during which separation from the family and formation of identity is achieved. The process of this development may impact the genetic counseling relationship. Family relationships may have a strong influence on the client's decision to have genetic testing. Additionally, it may be difficult to engage the client as adolescents may not have the ability to think abstractly and consider the short and long term consequences of genetic testing. It is helpful therefore to discuss the counseling process and techniques that may be useful when counseling these clients. This paper presents two case studies that illustrate some of the difficulties that may occur when counseling adolescents for genetic testing. The authors' have reflected on their clinical experience with these clients and this is presented here to add to the growing literature on this subject. [ABSTRACT FROM AUTHOR]

ABSTRACT Objective The aim of this study was to determine service users' experiences of and preferences for service delivery of fetal sex determination by noninvasive prenatal diagnosis (NIPD) using cell-free fetal DNA. Methods We used a qualitative approach using semistructured interviews. Thirty-eight women and six of their partners were recruited. Results NIPD was viewed as a positive development, which facilitated reproductive autonomy as it expanded reproductive choice. The majority of women heard about NIPD during pregnancy and had received information about the test at a specialist centre. Features of NIPD women considered most important were that it could be performed early in pregnancy and was safe. Participants had a preference for being given information about NIPD and test results by a healthcare professional experienced in genetic testing and with specialist knowledge about their condition, rather than a general practitioner or midwife who may not have the same level of knowledge. Women also valued receiving their test results by telephone. Conclusion Women were overwhelmingly positive about their experience of NIPD, which suggests that current delivery of this service in England is acceptable to these patients who are at high risk of sex-linked genetic disorders. They particularly valued expert counselling both before and after testing, emphasising that it should be offered through specialist services. © 2012 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Military spouses frequently cope with separation, but limited research reviewing the impact of an overseas relocation when a spouse accompanies their serving husband/wife has been conducted. A search for studies reviewing the impact of foreign postings on these accompanying spouses was undertaken utilizing 12 databases and other resources. Ultimately, 12 studies were analyzed and four key themes produced: functioning of a military family on an international posting, loss, wellbeing and support. Overall, additional stressors are associated with an overseas posting and experiences are specific to an individual and their circumstances. Further research is required to examine the potential relationship between a spouse's experiences overseas and the impact on their health and wellbeing. This would help to identify possible areas of health care provision and support necessary to maximize a military spouse's experience. [ABSTRACT FROM AUTHOR]

In many countries, specialist palliative day care for patients with life-limiting conditions is provided by specific teams of professionals from a range of relevant disciplines. During 2006 to 2007, the day care services at a hospice in the UK were redesigned so that specialist palliative care sessions replaced the existing long-established, traditional day care model. The purpose of this study was to enhance the understanding of those aspects of the service that the users valued most (the 'X-factor'). Qualitative data were collected via semistructured interviews with 29 patients and eight carers. These data were subjected to a framework analysis. The users of the service used poignant and powerful words to describe the special qualities that they valued, some phrasing it as the X-factor. The data are presented under three themes: the quality of the staff; the sense of community; and relationships. Of these, the relationships between and within the staff and patient groups held the greatest significance for the patients. Service providers need to recognize that opportunities for the formation of relationships between the patients, staff, and carers are of utmost importance when designing palliative day care services. [ABSTRACT FROM AUTHOR]

To provide nurse educators with an updated overview of advances in genetics and genomics in the context of the holistic perspective of nursing. Recent advances in genetic and genomic research, testing, therapies, and resources are presented, and the continuing importance of the family history is discussed. Genomic nurse experts reviewed recent literature and consumer resources to elucidate updates in technology through the lens of the genetically vulnerable patient and family. Genetic and genomic technologies are becoming routinely used in health care, and nurse educators will be challenged to incorporate these technologies and implications for patients and families into educational programs. New technology and its applications are perennial challenges to nurse educators, but the common focus for nursing, historically and geographically, is health promotion, symptom management, and disease prevention. Education for the next generation of nurses can lay a foundation in genetics and genomics that will enable interpretation and responsible integration of new technologies in a context of individual and family value systems, personal experiences, risk perception, decision consequences, and available resources. Nurses are ideally situated to inform patients about new options in healthcare, and nurse educators are challenged to prepare their students to interpret andresponsibly integrate new genetic-genomic information into practice. [ABSTRACT FROM AUTHOR]

Receiving the results of genetic carrier testing may have an impact on the psychosocial health of the individual. Numerous studies have been conducted to assess the psychosocial effects of carrier status for a range of conditions. To systematically review research focused on the psychological and social impact of carrier testing on individuals in order to identify factors affecting the impact of carrier testing results, and discern areas where further research is needed. Twenty relevant papers meeting criteria for inclusion in this review were found. The main themes identified across these studies included: anxiety, guilt and stigmatization, effect on family relationships, effect on self image, active coping mechanisms and reproductive issues. Variables related to the psychosocial effect of carrier testing included whether the carrier has an affected child, mode of inheritance, genetic counseling, and life stage. A key finding concerns carriers who already have an affected child; they are more likely to experience guilt and self-blame, and change their reproductive plans compared to carriers without affected children. Additionally, some participants reported clinical features of the disorder for which they were being tested. Genetic counselors may erroneously assume that parents with affected children are aware of their own carrier status in the absence of testing, and they may offer inadequate support. Additionally, counselors should attempt to address patient misconceptions related to their health and carrier status. [ABSTRACT FROM AUTHOR]

Objectives. To assess pregnant women's knowledge and understanding of first trimester prenatal screening (nuchal translucency, maternal serum free beta-human chorionic gonadotrophin and pregnancy-associated plasma-protein-A), to evaluate the impact of a new information booklet and investigate the effects of education and experiential knowledge of congenital disabilities on the perceived likelihood of accepting prenatal screening. Design. A quasi-experimental quantitative study with a self-completion questionnaire. Setting. Five different maternity care clinics in Iceland. Population. Expectant mothers in first trimester of pregnancy ( n = 379). Material and methods. Expectant mothers were divided into two groups, an intervention and a control group, both receiving traditional care and information. The intervention group additionally received an information booklet about prenatal screening and diagnosis. Main outcome measures. Women's knowledge score of prenatal screening. The correlation between education, knowledge score, experiential knowledge of congenital disabilities, and the likelihood of accepting prenatal screening. Results. More than half of the women (57%) believed they received sufficient information to make an informed decision about screening. Knowledge scores were significantly higher for the intervention group (with mean 4.8 compared with 3.7 on a 0–8 scale, p < 0.0001). Those with higher scores were more likely to accept screening ( p < 0.0001). Women with experiential knowledge of congenital anomalies in their own families were more likely to accept prenatal screening ( p = 0.017). Conclusions. Various factors, e.g. experiential knowledge, education and information about prenatal screening affect the likelihood of participation in prenatal screening programs. More information results in better knowledge and higher uptake rate. [ABSTRACT FROM AUTHOR]

Educational games have been shown to be effective in supporting learning, especially to reinforce knowledge, and students are generally positive about the use of games. The aim of this mixed-methods study that was conducted in the UK was to explore educators' views towards the use of educational games in the health sciences. The data were collected via semistructured interviews with 13 health educators and an online survey that was completed by 97 health educators. Three factors influence the use of classroom games: reflective practice, the impact of games on students, and the impact of logistical factors. Educators assess their own performance and the impact of the games on students when planning their use; however, large classes and the need for preparation time have a negative impact on educators' willingness to use games. Similar constraints might restrict the use of active learning strategies, such as simulation, that are crucial for enabling health professionals to develop competence. These issues require consideration when planning educational methods. [ABSTRACT FROM AUTHOR]

Purpose: To examine adaptation by nonsymptomatic individuals who knew the results of a genetic test for hereditary breast and ovarian cancer (HBOC) for at least 4 years. Design: Longitudinal grounded theory study. Methods: Follow-up interviews after a 3- to 4-year interval were conducted by telephone or e-mail with seven asymptomatic participants originally recruited for an earlier study of genetic testing experiences. A total of 14 interviews, 2 for each participant were conducted. Conceptual analysis on these 14 interviews focused on impact on daily life and health behavior decisions made in the intervening years. Findings: Participants described the impact of the result and adaptations made in relationships, sexuality, outlook, and plans for the future. Participants accepted recommended surveillance and preventative measures to maximize a healthy lifestyle and reported both the benefits of knowing their mutation status as well as challenges they had encountered since testing. Conclusions: Adaptation to living with genetic test results indicating a disease-related mutation is an ongoing process of balancing the knowledge of risk with living a normal life. Over time, awareness of genetic risk does not appear to diminish. Clinical Relevance: Positive and negative long-term consequences of genetic testing for hereditary breast or ovarian cancer may influence many aspects of the personal lives and health care decisions of those tested. [ABSTRACT FROM AUTHOR]

Title. Informed consent to healthcare interventions in people with learning disabilities – an integrative review. Aim. This paper is a report of an integrative review of informed consent to healthcare interventions in people with learning disabilities. Background. Consent to treatment lies at the heart of the relationship between patient and healthcare professional. In order for people with learning disabilities to have equity of access to health care, they need to be able to give informed consent to health interventions – or be assessed as incompetent to give consent. Data sources. The British Nursing Index (BNI), CINAHL, MEDLINE, Social Care Online, ERIC and ASSIA and PsycINFO databases were searched using the search terms: Consent or informed choice or capacity or consent to treat* or consent to examin* AND Learning disab* or intellectual* disab* or mental* retard* or learning difficult* or mental* handicap*. The search was limited to papers published in English from January 1990 to March 2007. Review methods. An integrative review was conducted and the data analysed thematically. Results. Twenty-two studies were reviewed. The main themes identified were: life experience, interaction between healthcare professionals and participants, ability to consent, and psychometric variables. A consensus seemed to emerge that capacity to consent is greater in people with higher cognitive ability and verbal skills, but that the attitudes and behaviour of healthcare professionals was also a crucial factor. Conclusion. The findings support use of the functional approach to assessing mental capacity for the purpose of obtaining informed consent. Future research into informed consent in people with learning disabilities is needed using real life situations rather than hypothetical vignettes. [ABSTRACT FROM AUTHOR]

Aim. The aim of this research was to identify the needs and coping strategies of individuals with Huntington disease and their family members/carers and to ascertain the extent to which they were supported by the type of specialised service provided in this unit. Background. The duration of the illness may be up to 30 years and there are far reaching implications for the affected person, family members and carers. Services for families need to provide expert psychological and practical support, whilst remaining planned and flexible. The aim of this research was to identify needs and coping strategies of individuals with Huntington disease and their carers and ascertain the extent to which they were supported by a specialised community service. Methods. Five focus groups and three individual interviews were used to gather data from affected individuals, family, carers and staff of the unit ( n = 33). A semi-structured discussion guide was used in every case. Data were analysed using an inductive coding technique. Results. Three main themes emerged; (i) Transitions and the journey, (ii) Challenges in finding and providing support and (iii) The role of the unit in providing supportive care. While the service was seen as supportive, the need for flexibility was emphasised to facilitate the transition from unaffected to affected status. Affected individuals felt it was important to be known as the person they had been, despite the changes due to the disease. Conclusions. Provision of service in a dedicated unit is an appropriate way to support affected patients and their carers. Enhancing understanding of the disease and allowing the individual to make choices can assist coping with this challenging disease. Relevance to clinical practice. It is helpful to allow patients control over timing and frequency of contact with professionals. Improving understanding of the condition in the public and health professionals may enable patients to access a greater range of social activities. [ABSTRACT FROM AUTHOR]

In some areas of health care, genomics is having a steadily increasing impact on clinical practice. Yet, in other areas, genomic developments are considered to be at the periphery of care. Health-care professionals from such areas might feel that the potential of genomics is exaggerated. To explore this issue, genetic nurse specialists were invited to submit case studies and to identify barriers and facilitators in incorporating genomics into mainstream nursing practice. Twenty-five cases were submitted and a total of 10 barriers and seven facilitators were identified. These cases were presented as a basis for debate in a session conducted at the 2006 Annual Conference of the International Society of Nurses in Genetics. The majority of delegates agreed that genomics would have a profound effect on health care and nursing within the next 5 years, particularly in oncology. That nurses do not see genomics as being relevant to their practice was identified as the greatest barrier, by a narrow majority. Specialist nurses in any field have a role in acting as agents of change, educators, and consultants to non-specialists. It is clear that genetics nurse specialists still have a considerable challenge in raising awareness about the relevance of genomics to mainstream nursing practice. [ABSTRACT FROM AUTHOR]

Advances in medicine and changes in health care provision have resulted in increasingly innovative methods of delivering health care, such as the development of critical care outreach teams (CCOTs). These teams aim to respond to the needs of the critically ill patient, regardless of the patient’s location within the acute hospital. The aim of this audit was to assess one aspect of the effectiveness of the Outreach team by examining the attitudes and opinions of the hospital clinical staff towards the outreach service provided. A questionnaire designed to investigate staff attitudes to and the use of the outreach team was sent to health professions staff at the acute hospital in which the outreach team was based. Anonymous responses were analysed using descriptive statistics and free text content analysis. One hundred questionnaires were returned (33% response rate) from staff of different professional backgrounds and departments. The results demonstrated a positive response from members of the multi-professional team, who believed that the CCOT was approachable and enhanced clinical care by providing help and advice, improving access to critical care services and facilitating development of critical care skills in clinical areas. In response to the findings, the number of hours per day in which the team operates has been increased. The findings demonstrated a belief by staff that the CCOT was instrumental in enhancing clinical care within the institution. While the findings of this audit are an informative addition to routine activity data, further studies are required to assess the acceptability of the service to patients and the impact of the service on patient outcomes. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. Journal of Nursing Scholarship, 2005; 37:3, 196-202. ©2005 Sigma Theta Tau International. [ABSTRACT FROM AUTHOR]

Previous studies of genetic counseling have mainly focused on outcomes defined by researchers or service providers, and have frequently related to changes in reproductive behavior and/or client knowledge. A longitudinal study of 43 families referred to a clinical genetic service was undertaken to ascertain client needs and expectations of the service, and to identify relevant outcomes from the clients' perspective. Semistructured interviews were conducted with each client, prior to and after genetic counseling. The transcribed interviews were analyzed using grounded theory. The need for certainty emerged as a powerful factor that motivated clients to pursue the genetic referral. The client's lay knowledge of the condition, satisfaction of the need for certainty, and the formation of a personalized relationship between the client and the genetics staff significantly influenced the central outcome, identified as a change in the client's psychological adaptation to the genetic condition in the family. [ABSTRACT FROM AUTHOR]

The author urges nurses in practice and those in education to urgently address the gap in fundamental nursing competence in genetic healthcare. Topics mentioned include the hindrances to improving nursing competence including the lack of structured input regarding genetics in the curricula, and the value of genetics in nursing and its effect on nurses' willingness to continue training and education on the field.

A correction is presented to the article "A Qualitative Study to Explore the Views and Attitudes towards Prenatal Testing in Adults who Have Muenke Syndrome and their Partners" which appeared in the 2017 issue.

The article discusses the importance of Genomics to health care and in nursing practice. It states that a special issue about the subject in the journal of nursing scholarship was intended to provide an overview about genome sequencing, clinical application and research issues associated for translation of it into health care. The article concludes stating that educating the nurses in genomic competency would facilitate effective use of genomics in clinical care.

The article offers information on the International Society of Nurses in Genetics (ISONG) conference titled "Global Issues in Genomic Healthcare," to be held at the Bristol Marriott City Center, Bristol, Great Britain, on May 18-21, 2007.

The annual conference of the International Society of Nurses in Genetics was held in Salt Lake City, USA on October 23–25, 2005. The abstracts published below were peer-reviewed submissions that were selected as spoken presentations to the conference. Nurses from any country who have an interest in genetic healthcare are welcome to join ISONG. Further details are available on the website ( ). [ABSTRACT FROM AUTHOR]

The aim of this study was to use clients’ accounts and factor analysis to develop a robust assessment and audit tool for clinical genetic services.Qualitative data abstracted from published studies were used to generate a number of statements (n = 57) related to outcomes of genetic services. The resulting questionnaire was mailed to clients of the Wales genetic service, who were asked to rank each statement on a 7-point Likert type scale. Ninety-seven anonymised responses were received (73% response rate) and subjected to factor analysis. Six main factors were found to contribute to the outcome of the service and were labeled (i) enhanced understanding; (ii) positive psychological change; (iii) respect for autonomy; (iv) adaptation; (v) disequilibrium; and (vi) value of contact. The tool will be validated for use in clinical and research contexts. [ABSTRACT FROM AUTHOR]

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., (Copyright 2005 Wiley-Liss, Inc.)