Cross-cultural survey development: The Colon Cancer Screening Behaviors Survey for South Asian populations.

OBJECTIVE: The objective of this work was to develop a survey that considered cultural relevance and diversity of South Asian populations, with the aim of describing or predicting factors that influence colorectal cancer screening intention and adherence. The scientifically rigorous approach for survey development informed the final phase of an exploratory mixed method study. This initial survey was later cross-culturally translated and adapted into the Urdu language, and thereafter, items were cognitively tested for conceptual relevance among South Asian immigrants. RESULTS: The initial development of the Colon Cancer Screening Behaviours Survey for South Asian populations was completed using a number of steps. Development involved: the identification of key concepts and conceptual model; literature search for candidate measures and critical appraisal; and, expert consultation to select relevant measures. Five published surveys included measures that covered concepts relevant to South Asians and colorectal cancer screening behaviours. However, measures from these surveys missed content that emerged through parallel field work with South Asians, and additions were required along with item modifications. In the final stage, cross-cultural translation and adaptation into Urdu, and cognitive testing were completed. Future research will require an examination of proposed relationships, and psychometric testing of measures in the survey.

Actitudes éticas de los pediatras de Cuidados Intensivos ante pacientes con atrofia muscular espinal tipo 1 / Ethical attitudes of intensive care paediatricians as regards patients with spinal muscular atrophy type 1

INTRODUCCIÓN: La atrofia muscular espinal tipo 1 (AME-1) es una enfermedad progresiva e incurable que plantea problemas éticos entre los profesionales de Pediatría. Nuestro objetivo ha sido conocer las opciones éticas de los pediatras de UCIP ante los pacientes con AME-1 y fracaso respiratorio. MATERIAL Y MÉTODOS: Estudio descriptivo transversal, mediante una encuesta anónima enviada a las UCIP de España y accesible en la web de la Sociedad Española de Cuidados Intensivos Pediátricos. RESULTADOS: Analizamos 124 respuestas (70% mujeres, 51% menores de 40 años, 54% de UCIP con más de 10 camas, 69% con experiencia previa con estos niños y 53% con creencias religiosas). En el último caso atendido, la mayoría de los pediatras optó por la ventilación no invasiva (VNI), realizando después limitación del esfuerzo terapéutico (LET). Ante un hipotético caso futuro, la mitad de los pediatras apoyarían la misma opción (VNI+LET) y el 74% apoyaría la decisión de la familia, aunque no coincidiera con la suya. No se observaron diferencias según la edad, la experiencia previa o el sexo. Los pediatras con creencias religiosas son menos partidarios de la LET inicial. El 63% considera que la calidad de vida de un niño con AME-1 y ventilación invasiva es muy mala. CONCLUSIONES: Ante un niño con AME-1 y fracaso respiratorio, la mayoría de los pediatras de UCIP están a favor de iniciar la VNI y realizar LET cuando dicho soporte no sea suficiente, pero apoyarían la decisión de la familia aunque no estuvieran de acuerdo con ella

INTRODUCTION: Spinal muscular atrophy type 1 (SMA-1) is a progressive and fatal disease that leads to ethical problems for Paediatric professionals. Our objective was to determine the ethical options of Paediatric Intensive Care Unit (PICU) paediatricians as regards a child with SMA-1 and respiratory failure. MATERIAL AND METHODS: A cross-sectional descriptive study was conducted using an anonymous questionnaire sent to PICUs in Spain (which can be accessed through the Spanish Society of Paediatric Critical Care web page). RESULTS: Of the 124 responses analysed, 70% were from women, 51% younger than 40 years, 54% from a PICU with more than 10 beds, 69% with prior experience in such cases, and 53% with religious beliefs. In the last patient cared for, most paediatricians opted for non-invasive mechanical ventilation (NIV) and limitation of therapeutic effort (LET) in case of NIV failure. Confronted with a future hypothetical case, half of paediatricians would opt for the same plan (NIV+LET), and 74% would support the family's decision, even in case of disagreement. Age, prior experience and sex were not related to the preferred options. Paediatricians with religious beliefs were less in favour of initial LET. Less than two-thirds (63%) scored the quality of life of a child with SMA-1 and invasive mechanical ventilation as very poor. CONCLUSIONS: Faced with child with SMA-1 and respiratory failure, most paediatricians are in favour of initiating NIV and LET when such support is insufficient, but they would accept the family's decision, even in case of disagreement

Patient-satisfaction surveys on a scale of 0 to 10: improving health care, or leading it astray?

Patient-satisfaction surveys can call attention to the importance of treating patients with dignity and respect, but good ratings depend more on manipulable patient perceptions than on good medicine. In fact, the pressure to get good ratings can lead to bad medicine.

[What are we doing in neighborhoods? Description of health-promoting community activities in primary care: the FrAC Project]. / ¿Qué hacemos en el barrio? Descripción de las actividades comunitarias de promoción de la salud en atención primaria: Proyecto frAC.

OBJECTIVE: To describe the health-promoting community activities developed in primary health care and compare types of activities and how they are performed among autonomous regions. METHODS: A descriptive multicenter study was carried out in primary care in 5 Spanish regions. We included community activities consisting of non-sporadic activities, carried out in the previous year, with the participation of the primary care team, and the active participation of the community or as a cross-sector activity. The persons responsible for each of the 194 teams were asked if the team participated in community activities and, if so, a questionnaire was completed by the person responsible for each activity. The variables consisted of the topic addressed, the target population, the professionals involved, the time and scope of implementation, evaluation, theoretical perspectives, network registration, the involvement of the community and other agents, and evaluation of this involvement. A descriptive analysis was performed, stratified by region. RESULTS: We identified 183 community activities in 104 teams. Although there was wide variability among regions, most activities were related to general health, nutrition and emotional-sexual health and targeted the general population, children or parents and were carried out in educational or health centers. Participating professionals had a median of 4 years of experience and a median of 2.8 professionals were involved in each activity. A total of 72.5% of the activities were performed during working hours, 75% were evaluated, and 70% were supported by theoretical and methodological perspectives. Non-health sectors were involved in 65%, local government in 60%, and nongovernmental organizations in 58.5%. Nurses were involved in 85.8% of the activities, physicians in 38.5%, and social workers in 35%. Substantial variability was detected among regions. DISCUSSION: Wide variability was found in the types of activities and their application among the community activities developed by primary care, as well as in institutional recognition and community involvement in the development and evaluation of these activities.

Ethical issues: the multi-centre low-risk ethics/governance review process and AMOSS.

BACKGROUND: The Australasian Maternity Outcomes Surveillance System (AMOSS) conducts surveillance and research of rare and serious conditions in pregnancy. This multi-centre population health study is considered low risk with minimal ethical impact. OBJECTIVE: To describe the ethics/governance review pathway undertaken by AMOSS. METHOD: Prospective, descriptive study during 2009-2011 of the governance/ethical review processes required to gain approval for Australian and New Zealand (ANZ) maternity units with more than 50 births per year (n = 303) to participate in AMOSS. RESULTS: Review processes ranged from a single application for 24 NZ sites, a single application for eligible hospitals in two Australian states, full Health Research Ethics Committee (HREC) applications for individual hospitals, through simple letters of support. As of September 2011, 46 full/expedited ethics applications, 131 site governance applications and 136 letters of support requests were made over 33 months, involving an estimated 3261 hours by AMOSS staff/investigators, and an associated resource burden by participating sites, to obtain approval to receive nonidentifiable data from 291 hospitals. CONCLUSION: The AMOSS research system provides an important resource to enhance knowledge of conditions that cause rare and serious maternal morbidity. Yet the highly variable ethical approval processes required to implement this study have been excessively repetitive and burdensome. This process jeopardises timely, efficient research project implementation, without corresponding benefits to research participants. The resource burden to establish research governance for AMOSS confirms the urgent need for the Harmonisation of Multi-centre Ethical Review (HoMER) to further streamline ethics/governance review processes for multi-centre research.

Adverse events arising from a palliative care survey.

Development of evidence-based practice requires investigation of the attitudes and needs of patients, families and healthcare professionals, particularly for sensitive subject areas. Cystic fibrosis (CF) is a recessively inherited life-limiting disorder resulting in early death. Patients with this condition generally expect that lung transplantation will be an available treatment option; however, this is uncertain. A dual approach to care that involves both preparing patients for transplant assessment, while simultaneously exploring acceptable palliative care options is needed. A survey amongst patients with CF, their families and health carers was conducted to understand their attitudes and needs in relation to end-of-life care. The survey encompassed five separate domains, with a total of 60 questions requiring approximately 20 min to complete. Of the 200 surveys sent to patients, 82 (41%) completed responses were received. The Institutional Ethics Committee received six complaints from families of seven patients (3.5% of those surveyed). This article explores the nature of the adverse responses to the survey. The majority of complaints were received from family members rather than from patients. Complaints described dissatisfaction with the topic, little warning about the study and felt it to be inappropriate for their family member's level of health. Survey instruments used to determine attitudes and needs in relation to end-of-life patient care are likely to elicit adverse responses that should be reported in a similar way to other investigational studies. Also arising from adverse responses and the complaint process, is the impact of criticism on study researchers.

Ética em pesquisa social: contribuição para o debate / Ethics in social research: contributions to the debate

O pesquisador que desenvolve estudos no campo da pesquisa social envolve, necessariamente, o ser humano como objeto de investigação, seja qual for o objetivo proposto. Por essa razão, encontra-se diante do campo da subjetividade das interações produzidas nesse contexto. Trabalha, ainda, com fenômenos emergentes das relações sociais, suas representações e significados. A partir dessa constatação, neste artigo foram selecionados alguns tópicos que envolvem a pesquisa social de abordagem qualitativa, tomando-se a ética como referencial. Para tanto, apresentase uma análise crítica referente aos aspectos que articulam o pesquisador em interação com o objeto e o sujeito da pesquisa; o cenário, o contexto e os sujeitos da investigação na pesquisa social, bem como os procedimentos que envolvem a coleta e a geração de dados. Não houve a intenção de apresentar um código de condutas que pudesse solucionar ou antecipar todos os problemas éticos relacionados ao campo da investigação, mas indicaram-se algumas práticas que podem orientar os pesquisadores no sentido de buscar ações investigativas adequadamente conduzidas do ponto de vista ético.

The researcher that develops studies in the of social research necessarily involves the human being as object of investigation, whatever are the proposed aims. Because of it, the researcher is in the of subjectivity of the interrelationship that emerges from this context, as well as works with the emerging phenomenon from the social interrelationships, its representations and meanings. From this premise, in this article were selected some topics about qualitative approach of the social research getting the ethics as a theoretical framework. Thus, it is presented a critical analysis about the aspects that articulates the researcher in interaction with the subject; the research setting,the context and subjects in social research and the procedures for data collection. In this perspective, it was not intended to present a code of conduct which would solve or anticipate all ethics dilemmas related to the of research, but to point some practices that could guide researchers to seek inquiry actions ethically conducted.

Absolute versus relative values: effects on family practitioners and psychiatrists.

BACKGROUND: Research demonstrates that religious values clearly impact on the judgments made by physicians and their patients. One basic dichotomy--belief in ethical values that do not change (absolute values) versus belief in values that change depending on the situation (relative values)--has recently been experimentally associated with different ethical decision-making patterns. METHODS: An anonymous, randomized, national survey and 1-week response prompt with 1-month follow-up mailing as necessary were distributed to nationwide samples of board-certified American family practitioners and psychiatrists. Physicians answered descriptive questions and standardized personality assessments and responded to three vignettes describing ethically sensitive scenarios concerning birth control medication for sexually active single women, euthanasia, and abortion. RESULTS: Response rates were 34% for psychiatrists and 38% for family practitioners. Family practitioners and absolutists were significantly more supportive of religious activities and had more religious parents than psychiatrists and relativists. Furthermore, family practitioners and absolutists were less approving of the vignettes than other groups. CONCLUSION: Family practitioners were more supportive of religious activities than psychiatrists as reported in previous research. The absolute versus relative value dichotomy is a useful concept in examining physician attitudes as they affect health care and personal behavior. However, questions concerning place of worship attendance and giving in addition to specific religious value labels may be more efficient experimentally. Physicians should be aware of their own biases in discussions with patients, families, and other health care providers.