Content validation study on the Advanced Practice Role Delineation Tool.

BACKGROUND: Role understanding and practice standards become extremely important in countries that are developing and assessing nursing and advanced practice nursing (APN) roles. AIM: To describe the process and findings of a content validation study conducted on the Advanced Practice Role Delineation (APRD) tool in a Finnish context. DESIGN: A tool content validation study. METHOD: Between September and October 2019, three rounds of surveys (n = 9, n = 8, n = 5) were conducted to assess the content validity of the APRD tool. Furthermore, a thorough literature review was conducted in December 2020 to examine how the tool has been used and validated between January 2000 and December 2020. RESULTS: A 45-item amendment of the APRD tool was created. The Scale Content Validity Index Average of 0.97 reflects excellent content validity. A literature review of 15 studies revealed that the tool has been used by many researchers, yet there is limited research on its content and construct. CONCLUSION: The steps taken in this study were effective and may be replicated in other countries. Further studies are needed to validate the content and structure of the developed 45-item modification of the APRD tool.

Identifying personal health-related resources of women with breast cancer for nursing: An integrative review.

Personal health-related resources are essential for women with breast cancer, as these help them to maintain their own health and well-being during different phases of their illness. The purpose of this integrative review was to identify, describe and synthetise what personal health-related resources have already been identified for this patient group. We carried out an integrative review to find papers that focused on personal health-related resources for women with breast cancer aged 18-64 years. The search covered 1 January 2005 to 31 May 2021 and was carried out using the CINAHL, PubMed, PsycINFO, Web of Science and Cochrane Library databases. It was limited to peer-reviewed scientific papers with abstracts published in English and 23 papers met the inclusion criteria. The data were analysed using content analysis. Personal health-related resources for women with breast cancer consisted of three different, but inherently interconnected, categories of personal strengths, person-centred cancer care and social support from and involvement in their cultural community. Personal health-related resources for women with breast cancer were multifaceted. Women need nursing support to identify and use these resources and future studies are needed to strengthen how they are measured.

Outcomes and challenges of successful clinical nurse specialist role implementation: Participatory action research.

AIM: To describe the clinical nurse specialist role and its outcomes and challenges. DESIGN: Participatory Action Research conducted in Finland between the fall of 2017 and the end of 2018. METHODS: A core participatory action research team (n = 10) led the design, implementation and evaluation of the research. Multiple data collection methods were used. The study is reported using the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines for participatory action research. RESULTS: The clinical nurse specialist used most of the time in clinical patient care followed by clinical nursing leadership and scholarship activities. Outcomes of successful implementation led to increased visibility of nursing expertise, development, integration and quality assurance of nursing processes and practice, and promotion of knowledge translation and unit and collaborator cooperation. Furthermore, role challenges were also recognized.

Ethical Aspects of Genotype Disclosure: Perceptions of Participants in a Nutrigenetic Study in Finland.

OBJECTIVE: The aim of this study was to gain insight into the understanding of genetics and perceptions on the ethical issues related to genotype disclosure of the participants in a nutrigenetic study. METHODS: A close-ended questionnaire was developed based on literature and discussions among the research group members. The questionnaire contained a -total of 33 questions, which were divided into 4 categories - demographics, knowledge assessment, concerns related to participation, and opinions on disclosure of information. Majority of the participants (250 out of 281) of a nutrigenetic study, in which effect of disclosing APOE allele status on lifestyle changes was studied, completed the questionnaire online following the informed consent process. The responses from the knowledge assessment and the concern categories were transformed into knowledge and concern scales, respectively, and analysed by descriptive statistical methods. The statistical associations between the categorical variables were determined using χ2 test of independence. The relationship between the continuous variables was assessed using Pearson product-moment correlation coefficient and internal consistency of questions by Cronbach's alpha. RESULTS: No correlation was observed between the level of education and knowledge scores. About 10% of the participants thought that the genetic predisposition would be stressful to them and their family members. CONCLUSIONS: Careful distribution of information before a nutrigenetic study supports understanding and reduces concerns of genetic susceptibility. In Finland, strong basic education is likely to have strengthened the trust in research process.

Clinical nurse specialist role implementation structures, processes and outcomes: Participatory action research.

AIM: To develop, implement and evaluate the clinical nurse specialist's role within a specialist medical healthcare hospital. A secondary aim was to assess the feasibility of the 'Clinical Nurse Specialist Conceptualisation, Implementation, and Evaluation framework' in the role implementation. BACKGROUND: Implementation of advanced practice nursing roles is an increasing practice around the globe; however, the implementation of these roles is multidimensional, complex process. Clear implementation strategies are needed. DESIGN: Participatory action research was conducted in Finland between 2017-2018. METHODS: The researchers adopted an outsider approach to work with staff, considered as co-researchers, within two participating units. A combination of several methods, such as focus group interviews, action-learning groups and researcher reflective field journal, was used to gather data. The 'Clinical Nurse Specialist Conceptualisation, Implementation, and Evaluation framework' was used to structure the processes undertaken, and the Donabedian structure, process and outcome model was used to structure and analyse the results. The study was reported using the EQUATOR guideline for participatory action research. RESULTS: The results demonstrated the complexity of the role implementation process. Four implementation themes of need analysis, role design, role implementation and role evaluation were examined and described through their structures, processes and outcomes. The 'Clinical Nurse Specialist Conceptualisation, Implementation and Evaluation framework' was validated for its appropriateness guiding the role implementation process. CONCLUSIONS: Role implementation is a complex process which structured, practical guidelines may facilitate. The examined framework may facilitate the role implementation process conducted within organisations. RELEVANCE TO CLINICAL PRACTICE: This research provides complimentary information for individuals and organisations aiming to develop a clinical nurse specialist or other advanced practice nursing roles. Furthermore, we describe a participatory action research process, which offers the means for self-reflection and planning of purposeful actions to improve the conditions of clinical practice.

Construct validity of clinical nurse specialist core competency scale: An exploratory factor analysis.

AIM: To conduct a construct validity test on a clinical nurse specialist core competency scale. BACKGROUND: Clinical nurse specialists' competency development dates back to the late 20th century; however, there is scarcity of competency descriptions from outside of North America. Furthermore, little knowledge is available on the previous research-driven efforts to develop and validate clinical nurse specialist core competencies. DESIGN: A descriptive study, using an online self-report questionnaire, was conducted from May to September 2019 in three Nordic countries. METHODS: An exploratory factor analysis using principal axis factoring and rotation method oblimin with Kaiser normalisation was undertaken to examine factors in the 50-item scale. Parallel analysis with eigenvalue Monte Carlo simulation and scree plot was used to determine the number of factors to extract. Psychometric properties of the scale were evaluated, and subjective interpretation was used to modify the tool in line with the statistical analysis. The STROBE checklist was used as the reporting guideline for this study. RESULTS: One hundred and eighty-four responses were obtained (Finland n = 52, Denmark n = 95, Iceland n = 37) with an overall response rate of 45%. The results provided construct validity evidence of the underlying theoretical structures of the four competency spheres of patient, nursing, organisation and scholarship. Cronbach's alpha coefficient for the original overall scale was 0.94, thus indicating adequate reliability of the scale. CONCLUSIONS: Based on the analysis and subjective interpretation, we suggest a 47-item clinical nurse specialist core competency scale. Further study should be conducted to validate the core competency content and construct in other contexts beyond the present study. RELEVANCE TO CLINICAL PRACTICE: The scale may be used to guide clinical nurse specialist practice and identify areas for professional development, develop graduate-level programme curricula and inform future competency research.

Barriers and Facilitators to Cervical Screening among Migrant Women of African Origin: A Qualitative Study in Finland.

Globally, cervical cancer constitutes a substantial public health concern. Evidence recommends regular cervical cancer screening (CCS) for early detection of "precancerous lesions."Understanding the factors influencing screening participation among various groups is imperative for improving screening protocols and coverage. This study aimed to explore barriers and facilitators to CCS participation in women of Nigerian, Ghanaian, Cameroonian, and Kenyan origin in Finland. We utilized a qualitative design and conducted eight focus group discussions (FGDs) in English, with women aged 27-45 years (n = 30). The FGDs were tape-recorded, transcribed verbatim, and analyzed utilizing the inductive content analysis approach. The main barriers to CCS participation included limited language proficiency, lack of screening awareness, misunderstanding of screening's purpose, and miscomprehension of the CCS results. Facilitators were free-of-charge screening, reproductive health services utilization, and women's understanding of CCS's importance for early detection of cervical cancer. In conclusion, among women, the main barriers to CCS participation were language difficulties and lack of screening information. Enhancing screening participation amongst these migrant populations would benefit from appropriate information about the CCS. Those women with limited language skills and not utilizing reproductive health services need more attention from healthcare authorities about screening importance. Culturally tailored screening intervention programs might also be helpful.

Environmental responsibility in nursing in hospitals: A modified Delphi study of nurses' views.

OBJECTIVES: To identify nurses' views on environmentally responsible clinical practices, and to examine their consensus regarding the stakeholders and their roles and tools needed to promote, and enable, environmental responsibility in clinical practice. BACKGROUND: Using materials and energy in hospitals has a negative impact on the environment and people's environmental health. Research on decreasing this burden in clinical practice is sparse. DESIGN: A modified Delphi method with two rounds. METHODS: Data were collected from 35 nursing staff in five Finnish university hospitals in 2019. The first-round data were collected with semi-structured interviews in small groups and subjected to content analysis. The second-round data were collected with an Internet-based questionnaire from 27 of those participants and statistically analysed. The CREDES checklist was used. RESULTS: According to nurses, environmentally responsible clinical practices focus on effective material and energy use. Material use focused on sustainable and cooperative purchasing, considerate use of products and minimising waste and idle electricity and reducing water and transport use. The tools needed to promote, and enable, environmental responsibility in clinical practice were staff inducements and training and certain resources and guidance. All the hospital health and support service staff needed to commit to collaboration. CONCLUSIONS: It is important to address stakeholders' roles in environmental responsibility in hospitals. Environmental aims should be firm and visible, and nurses should have the relevant competencies. They also need sufficient time to develop environmental initiatives and proper facilities to carry out their work with a minimal environmental burden. Providing staff feedback and rewards for their environmental efforts is beneficial for engagement. RELEVANCE TO CLINICAL PRACTICE: This study will help nurses to identify their needs and opportunities to realise and develop environmental responsibility in their practice. It can also inform hospital leaders to develop corporate environmental responsibility, including in-service training.

Parents' perspective on their responsibilities with regard to adolescents' use of alcohol.

BACKGROUND: Parents have responsibilities when their adolescent offspring use alcohol, but little is known about their views on the topic. This knowledge would help healthcare organisations to develop practices to help parents meet their responsibilities. AIM: The aim of this study was to describe parents' perceptions and experiences of their responsibilities and what support they needed to tackle underage drinking. DESIGN AND METHODS: This Finnish study was carried out in 2017. It used a qualitative descriptive method that involved carrying out semi-structured interviews with 20 parents of adolescents aged 14-15 years. The data were analysed using inductive content analysis. RESULTS: Parents described that it was their responsibility to prevent problems that could have a negative impact on their adolescents' well-being. When it came to their responsibilities with regard to adolescents using alcohol, parents saw these as guiding and protecting their child, being aware of how parents used alcohol themselves, the way they communicated with adolescents and the rules they set about experimenting with alcohol. Parents said that receiving collaborative support from peers, community and professionals working in health and social care services would be useful. This could help them to prevent adolescents using alcohol, tackle problems that occurred when adolescents drank and enable parents to play a responsible role in their local community. CONCLUSION: Parents recognised that they had responsibilities to prevent alcohol having a negative impact on adolescents' well-being. They wanted to ensure that adolescents made sensible and responsible decisions when it came to using alcohol. Parents described that the most important form of support was peer support from other parents. The findings of this study can be used to inform the development of preventive healthcare services and support parents to meet their responsibilities with regard to tackling underage drinking.

Improving employment opportunities of the unemployed by health and work ability promotion in Finland.

The study explored the impact of self-rated health (SRH) and work ability on employment, and examined the effects of meaningfulness, social networks and physical activity on health and work ability with a population-based cross-sectional survey data (n = 12 729) of full-time employed and unemployed workers. SRH, perceived work ability and levels of perceived meaningfulness, social networks and physical activity were all significantly better among employed workers compared to unemployed people. The results showed that work ability mediated the effect of health on employment and predicted employment. Meaningfulness, social networks and physical activity had direct positive effects on health and work ability, and also on employment. The results indicated that good health is a substantial element of good work ability, which in turn is needed to maintain or to get a job. Our findings suggested that perceiving one's life as meaningful, having a strong social network and being physically active are important predictors of good health as well as of good work ability. These could be contributing factors to re-employment among unemployed people.

Information Provided to Consumers about Direct-to-Consumer Nutrigenetic Testing.

BACKGROUND: Nutrigenetic tests are often considered to be less serious compared to other health-related genetic tests, although they share similar ethical concerns. Nutrigenetic tests are mainly available through direct-to-consumer genetic testing (DTC GT) and increasing in popularity. OBJECTIVE: To analyze the contents of nutrigenetic DTC GT websites with respect to the adequacy of the information provided to support a well-informed decision of purchasing the tests. METHODS: The websites of DTC GT companies selling nutrigenetic tests that could be ordered online without involving any healthcare professional, available in English, marketing tests in Europe, the USA, Australia, or Canada, and accessible from Finland were included in the study (n = 38). Quantitative and qualitative content analyses of the websites were carried out with the help of a codebook. RESULTS: Of the 38 websites, 8 included a clearly identifiable and easy-to-find information section about genetics. The quality and contents of these sections were often insufficient and/or misleading. Fourteen websites had specific sections discussing the risks related to GT, and on 13 signed informed consent was requested for GT. Furthermore, only 2 of the companies offered any kind of pretest consultation and 13 offered mostly separately charged posttest consultation. The complex structure of the websites made it difficult to find all key information, with many important aspects buried in legal documents, which were challenging to comprehend even for a professional. CONCLUSION: The structure of the websites and the amount and quality of the content therein do not support a well-informed decision.

Developing a scale: Adolescents' health choices related rights, duties and responsibilities.

BACKGROUND: Adolescents' health choices have been widely researched, but the ethical basis of these choices, namely their rights, duties, and responsibilities, have been disregarded and scale is required to measure these. OBJECTIVE: To describe the development of a scale that measures adolescents' rights, duties, and responsibilities in relation to health choices and document the preliminary scale testing. RESEARCH DESIGN: A multi-phase development method was used to construct the Health Rights Duties and Responsibilities (HealthRDR) scale. The concepts and content were defined through document analysis, a systematic literature review, and focus groups. The content validity and clarity of the items were evaluated by expert panel of 23 adolescents, school nurses, and researchers. We calculated the content validity index and the content validity ratio at on item and scale levels. Preliminary testing was conducted with 200 adolescents aged 15-16 years. Descriptive statistics, Cronbach's alpha correlation, and statistics for the item-analysis were calculated. ETHICAL CONSIDERATIONS: Ethical approval and permission were obtained according to national legislation and responsible research practice was followed. Informed consent was obtained from the participants and the parents were informed about the study. FINDINGS: The Health Rights Duties and Responsibilities scale comprises of four sub-scales with 148 items: 15 on health choices, 36 on rights, 47 on duties, and 50 on responsibilities. The items had a 0.93 content validity index and a 0.85 content validity ratio. Cronbach's alpha correlation coefficient was 0.99 for the total scale and the individual sub-scales scores were health choices (0.93), rights (0.97), responsibilities (0.99), and duties (0.98). DISCUSSION: The findings are discussed in light of the ethical concepts and validity and reliability of the developed scale. CONCLUSION: The Health Rights Duties and Responsibilities scale defines and understands adolescents' rights, duties, and responsibilities in relation to health choices and has good content validity. Further testing and refinement of the concepts are needed.

Intensive care nurses' perceptions of various ethics concerns affecting clinical research.

BACKGROUND: Intensive-care unit (ICU) nurses have an important role in the recruitment of patients for scientific research and in the performance of clinical research. AIM: A study was conducted to examine ICU nurses' perceptions of ethics-related aspects of ICU-based research. The study focused on nurse attitudes and knowledge related to clinical research, with special emphasis on perceptions of the informed-consent process in ICU research. METHOD: The study applied a descriptive qualitative approach, involving semi-structured group interviews and theme-based inductive content analysis. Subjects were ICU nurses (n = 28) at a university hospital ICU who had experience with research protocols applied in that unit. FINDINGS: The nurses had mainly positive perceptions of clinical studies. They found research beneficial for future patients and for society. The nurses considered the information given to them about the studies inadequate. They were concerned about the fact that the consent for research is almost always obtained at the beginning of the ICU care, when patients and relatives are still in the crisis period. This limits the possibility of understanding and assimilating the information provided on the study. CONCLUSIONS: The role of ICU nurses in clinical studies should be more prominent and taken into account in the planning of ICU studies.

Attitudes of Nurses and the General Public Towards Euthanasia on Individuals with Dementia and Cognitive Impairment.

OBJECTIVES: Despite the increasing prevalence of dementia, little is known about individuals' attitudes towards euthanasia on patients with dementia or cognitive impairment. METHODS: Nurses (n = 1003) and representatives of the general public (n = 2796), recruited via social media and the Finnish Nurses Association, completed an electronic questionnaire in 2014. RESULTS: Euthanasia due to severe dementia was approved by 54.6% of nurses and 64.4% of the general public. Depending on the age of the patient, between 50.0% and 54.7% of nurses and between 58.3% and 60.9% of the general public supported euthanasia on patients with severe cognitive impairment. DISCUSSION: The attitudes towards euthanasia due to dementia or cognitive impairment are slightly more accepting among the general public than among nurses. Apart from religiosity, none of the background factors were found to be reliable predictors of individuals' attitudes. Additional research is needed to describe the underlying reasons for the attitudes.

Finnish nurses' attitudes towards their role in the euthanasia process.

BACKGROUND: Nurses' voices remain unheard in most debates about euthanasia, although their crucial role in the euthanasia process is widely acknowledged. Moreover, in Canadian euthanasia law, nurses have a more active role, which further highlights the need for knowledge about nurses' attitudes towards their role in the euthanasia process. RESEARCH QUESTIONS: What are Finnish nurses' attitudes towards their potential role in the euthanasia process? Which characteristics are associated with those attitudes? RESEARCH DESIGN: Cross-sectional web-based survey. PARTICIPANTS AND RESEARCH CONTEXT: 1003 nurses, recruited via social media and the members' bulletin of the Finnish Nurses Association. ETHICAL CONSIDERATIONS: Ethical approval was obtained from the Committee on Research Ethics of the university to which the first author was affiliated. FINDINGS: The great majority (85.2%) of nurses felt that their perspective should be considered in decision-making related to euthanasia. Furthermore, most of the participants (74.7%) reported willingness to participate in the euthanasia process if it were legal, and 88.6% agreed that a nurse should be present when euthanasia is performed if the patient wishes so. Furthermore, over half agreed that some of the preparatory tasks were part of their job description. However, a minority (32.9%) agreed with a possible obligation to participate based on their profession. Nurses' age, religiosity and educational level influenced their attitudes in the current results. DISCUSSION: Despite the strong agreement on decision-making concerning euthanasia and participation in the euthanasia process, obligation to participate based on the profession was rejected by most participants. Nurses regarded themselves as consultants in the decision-making process, which may indicate their unwillingness to share the responsibility for the decision itself. CONCLUSION: Specific safety mechanisms should be considered to protect nurses who refuse to be involved in the euthanasia process due to harm that involuntary participation might cause.

Creating a Culture of Health in Planning and Implementing Innovative Strategies Addressing Non-communicable Chronic Diseases.

Ongoing demographic changes are challenging health systems worldwide especially in relation to increasing longevity and the resultant rise of non-communicable diseases (NCDs). To meet these challenges, a paradigm shift to a more proactive approach to health promotion, and maintenance is needed. This new paradigm focuses on creating and implementing an ecological model of Culture of Health. The conceptualization of the Culture of Health is defined as one where good health and well-being flourish across geographic, demographic, and social sectors; fostering healthy equitable communities where citizens have the opportunity to make choices and be co-producers of healthy lifestyles. Based on Antonovsky's Salutogenesis model which asserts that the experience of health moves along a continuum across the lifespan, we will identify the key drivers for achieving a Culture of Health. These include mindset/expectations, sense of community, and civic engagement. The present article discusses these drivers and identifies areas where policy and research actions are needed to advance positive change on population health and well-being. We highlight empirical evidence of drivers within the EU guided by the activities within the thematic Action Groups of the European Innovation Partnership on Active and Healthy Aging (EIP on AHA), focusing on Lifespan Health Promotion and Prevention of Age-Related Frailty and Disease (A3 Action Group). We will specifically focus on the effect of Culture on Health, highlighting cross-cutting drivers across domains such as innovations at the individual and community level, and in synergies with business, policy, and research entities. We will present examples of drivers for creating a Culture of Health, the barriers, the remaining gaps, and areas of future research to achieve an inclusive and sustainable asset-based community.

Privacy of Clinical Research Subjects: An Integrative Literature Review.

With changes in clinical research practice, the importance of a study-subject's privacy and the confidentiality of their personal data is growing. However, the body of research is fragmented, and a synthesis of work in this area is lacking. Accordingly, an integrative review was performed, guided by Whittemore and Knafl's work. Data from PubMed, Scopus, and CINAHL searches from January 2012 to February 2017 were analyzed via the constant comparison method. From 16 empirical and theoretical studies, six topical aspects were identified: the evolving nature of health data in clinical research, sharing of health data, the challenges of anonymizing data, collaboration among stakeholders, the complexity of regulation, and ethics-related tension between social benefits and privacy. Study subjects' privacy is an increasingly important ethics principle for clinical research, and privacy protection is rendered even more challenging by changing research practice.

Association between good work ability and health behaviours among unemployed: A cross-sectional survey.

BACKGROUND: There has been relatively little research on the possible factors promoting good work ability among unemployed people. Consequently, the role of health behaviours in good work ability among the unemployed is unknown. PURPOSE: To explore the work ability and health behaviours of unemployed people through sociodemographic factors and examine the association between good work ability and health behaviours. DESIGN: A cross-sectional survey. METHODS: The study is based on the Finnish nationwide Regional Health and Well-being Study using mailed and online questionnaires in 2014-2015. A total of 1973 unemployed or laid-off people between the ages of 20 and 65 responded to the survey. The associations of work ability with sociodemographic factors - gender, age, marital status, minors (i.e. under-18s) living in the household, education, living environment, and duration of unemployment - and health behaviours with sociodemographic factors were first explored using cross-tabulations. Health behaviours included body mass index, daily smoking, alcohol consumption, vegetable consumption, health promotion groups, physical exercise, and sitting in one's leisure time. Health behaviours were then examined using logistic regression analyses, in association with good work ability; the latter was measured with the Work Ability Score. RESULTS: Being aged below 45, being married or cohabiting, having a high level of education, and short-term unemployment were associated with good work ability. A quarter of participants were daily smokers. A proportion of women with risk level alcohol use (79%) was higher than that of men (59.9%). A third of unemployed people participated in high-intensity physical activity. In regression analyses, high-intensity physical activity (OR 2.25, 95% CI 1.06-4.78) was associated with good work ability. CONCLUSIONS: Unemployed women and men widely exhibited unhealthy behaviours such as daily smoking and a risk level use of alcohol. Health promotion actions for enhancing a healthy lifestyle and good work ability among unemployed people, particularly in emphasizing the importance of physical activity, are highly recommended.

Constructing content validity of clinical nurse specialist core competencies: exploratory sequential mixed-method study.

RATIONAL: The demand to increase nursing competence is brought on by the requirement of safe, accessible and more effective use of healthcare provider expertise. Clinical nurse specialist competency development dates back to the late 20th century; however, an examination of the literature reveals a lack of research and discussion to support the competency development. OBJECTIVES: To describe the formulation and validation process of the clinical nurse specialist core competencies. DESIGN: Exploratory sequential mixed-method design. METHODS: This mixed-method study, conducted between 2013 and 2017 in Finland, involved four phases: I) a Policy Delphi study (n = 25, n = 22, n = 19); II) cross-mapping of preliminary competency criteria against international competency sets; III) content validity study of expanded competency criteria (n = 7, n = 10); and IV) verification of competency criteria with practicing CNSs (n = 16). Data were analysed by both qualitative and quantitative analysis methods. RESULTS: Seventy-four preliminary clinical nurse competency criteria were formulated in the first phase of the study. Through cross-mapping the competencies against the US and Canadian clinical nurse specialist competency sets, they were further concised to 61 criteria. The examination of Content Validity Indexes and experts' comments led to the clarification and consequent inclusion of 50 criteria to the final scale, with Scale Content Validity Index Average of 0.94. The competency criteria were evaluated to be a solid set with potential to clarify and uniform the clinical nurse specialist roles. CONCLUSIONS: Through a rigorous research process, validated clinical nurse specialist competency criteria were formed with a high Scale Content Validity Index Average. The results allude to the potential of formulating international competency criteria to support global role clarity and understanding. However, further research is needed to validate the content and construct of the formulated competencies with a larger population across countries.

Comparable indicators of therapeutic misconception between epilepsy or Parkinson's disease patients between those with clinical trial experience and trial non-participants.

PURPOSE: Study design, personal persuasions, and experiences can influence willingness to participate in clinical trials (CTs). A study assessed differences between Parkinson's disease (PD) or epilepsy patients having participated in CTs and non-participants in knowledge of and attitudes toward CTs. Also considered were factors in willingness to take part and how CT participants experienced the informed consent process. METHOD: Random samples of members of Finland's PD (n = 2000) and epilepsy (n = 1875) patient organisations were posted a questionnaire on their views about CTs. Of the 1050 questionnaires returned, 845 met inclusion criteria. In total, 126 had participated in CTs. RESULTS: While over 90% of respondents knew that participation is always voluntary, CT participants were more often aware that one can withdraw (p<0.001). In both groups, most did not recognise the possibility of randomisation, and 57% in both CT participants and non-participants indicated that CTs are aimed primarily at seeking the best medication for the participant. Nevertheless, 83% of CT participants indicated ability to understand the information provided. CONCLUSIONS: While most in our study agreed that patients should be asked to participate in CTs, only 15% of subjects had done so. The discrepancy between willingness to participate and recruitment figures could be minimised by improving knowledge of CTs and communication between patients and researchers. Additionally, the groups displayed comparable false CT-related assumptions, raising questions about whether these subjects fully understood the clinical research's ultimate goal and CT participants had given true informed consent. These issues have practical and ethics implications for clinical investigators.