Dignity and the provision of care and support in 'old age homes' in Tamil Nadu, India: a qualitative study.

BACKGROUND: In 2016, Tamil Nadu was the first state in India to develop a set of Minimum Standards for old age homes. The Minimum Standards stipulate that that residents' dignity and privacy should be respected. However, the concept of dignity is undefined in the Minimum Standards. To date, there has been very little research within old age homes exploring the dignity of residents. This study draws on the concepts of (i) status dignity and (ii) central human functional capabilities, to explore whether old age homes uphold the dignity of residents. OBJECTIVES: The study was designed to obtain insights into human rights issues and experiences of residents, and the article addresses the research question, "to what extent do old age homes in Tamil Nadu support the central human functional capabilities of life, bodily health, bodily integrity and play, and secure dignity for older residents?". METHOD: A cross-sectional qualitative exploratory study design was utilised. Between January and May 2018 face-to-face interviews were conducted using a semi-structured topic guide with 30 older residents and 11 staff from ten care homes located three southern districts in Tamil Nadu, India. Framework analysis of data was structured around four central human functional capabilities. RESULTS: There was considerable variation in the extent to which the four central human functional capabilities life, bodily integrity, bodily health and play were met. There was evidence that Articles 3, 13, 25 and 24 of the Universal Declaration of Human Rights were contravened in both registered and unregistered facilities. Juxtaposing violations of human rights with good practice demonstrated that old age homes have the potential to protect the dignity of residents. CONCLUSION: The Government of India needs to strengthen old age home policies to protect residents. A new legislative framework is required to ensure that all old age homes are accountable to the State. Minimum Standards should include expectations for quality of care and dignity in care that meet the basic needs of residents and provide health care, personal support, and opportunities for leisure, and socializing. Standards should include staff-to-resident ratios and staff training requirements.

Cancer guideline development in Europe: a survey among ECCO members.

A survey was conducted among European Cancer Organisations by the European CanCer Organisation (ECCO) to evaluate initiatives on cancer guideline development. An electronic questionnaire based on the 'Appraisal of Guidelines Research and Evaluation' (AGREE) instrument was sent to different ECCO members and other Scientific European Organisations involved in cancer care. Between April 2010 and July 2010, 30 European Cancer Organisations (ECOs) were contacted and 21 responded to the questionnaire. Of these, 13 were involved in the production of clinical practice guidelines. The majority of the cancer guidelines were treatment or disease-management related (84.6%). The objectives were appropriate clinical care (76.9%), cost containment (7.7%) or both (23.1%). Almost all organisations developed guidelines for their members but more than half were also aimed at policy makers (53.9%). In 69% of cases, the guidelines were developed according to specific instructions by searches in an electronic data base while in 46.2% there was a manual evaluation of the original articles. Disciplines almost always involved in guideline development groups were the medical and nursing specialities, while in some groups, communication specialists were always involved. Patients, as key stakeholders of the guidelines were involved by eight organisations in their development. The median costs for the development of a cancer guideline were between 25000 and 50,000 euro. This survey shows that many European cancer organisations are producing cancer guidelines. Since their development is both costly and time consuming, a coordinated approach should be encouraged.

Online information as a decision making aid for cancer patients: recommendations from the Eurocancercoms project.

A pan-European survey was conducted under the auspices of the FP7 Eurocancercoms project during the period September 2010-March 2011. It was designed to broaden public policy understanding of patients' specific needs when seeking online cancer information and aimed to identify gaps in the online cancer information provision across Europe. In this paper we describe the methodology and main findings of the Tenovus survey, and draw some recommendations on the use of online information as a decision making aid for cancer patients and their families, namely: (1) transparency and accountability of the sources of information presented online; (2) accreditation of information by different recognised forms of authority and expertise, i.e. both by health-care professional and by patients/public members belonging to patient advocacy groups; (3) scaling up of information: we envisage a 3-tiered system that would enable patients to access different levels of complexity and volume of information from summary to detailed; (4) embedding of custom search tools and interactive search technologies to allow users to define requirements tailored on their needs and be context-driven; (5) communication across discipline boundaries, as patients' and doctors' online communities have very little or no contact among one another. These recommendations were applied for building the online platform EcancerHub, also under the auspices of the Eurocancercoms project, which by bringing together the different cancer communities seeks to break down traditional information boundaries, and through the interactions produce a surplus knowledge that could aid patients in difficult decision making times.

Patient perceptions of carrying their own health information: approaches towards responsibility and playing an active role in their own health - implications for a patient-held health file.

OBJECTIVE: To elicit patients' views on whether they could contribute to improvements in their care by carrying their own health information to clinician encounters; and to consider the implications for the development of a patient-held health file (PHF). BACKGROUND: Increasing rates of chronic disease lead to health care being delivered by multiple care providers often at distributed geographic locations. As a way of increasing the availability of patient information to care providers our project will trial a PHF. Patients carry these files to doctors' appointments where clinicians record data for other doctors or the patient. Increasing the availability of patient information is anticipated to enhance the safety and quality of care delivery and improve health outcomes. STUDY DESIGN: Qualitative semi-structured interviews were conducted with 10 patients. Participants were evenly distributed in terms of gender, aged 60 years or greater and visited at least two specialists and one general practitioner. FINDINGS: In this exploratory study, patients who were currently active in decision making about their own health already recorded some health information. They were receptive to carrying their information and thought they should take some responsibility for their health. Patients who were more passive in making decisions about their health did not perceive a need to carry their own information and felt that their doctors communicated adequately. CONCLUSION: Patient-held health files provide an opportunity for patients to access their health information. Such files have the potential to improve health outcomes for patients who adopt both active and passive roles in relation to their own health and engaging with their health information.