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.

A research agenda for promoting continence for people living with dementia in the community: Recommendations based on a critical review and expert-by-experience opinion.

AIMS AND OBJECTIVES: To identify research undertaken in the last decade addressing continence for people living with dementia (PLWD) in the community. To highlight gaps and develop recommendations for future research, taking into account the experiences and priorities of PLWD, caregivers and healthcare professionals. METHODS: A critical review with an Expert Review Group (ERG) comprising researchers, PLWD and facing continence issues, caregivers and other professional stakeholders. Findings are reported in line with the COREQ and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews checklists. BACKGROUND: Caregivers rate the independent use of the toilet as the most important activity for PLWD to retain. However, in 2009 a review identified shortfalls in knowledge and praxis around promoting continence and managing incontinence for PLWD in the community. As absolute numbers of people with dementia are predicted to increase, it is imperative to examine whether these deficits have been addressed. RESULTS: Of 3,563 records identified, 57 full-text articles were reviewed. The ERG developed a conceptual model to summarise research evidence according to the extent of the challenge (neuropathology and clinicopathology, prevalence and incidence), gateways to continence services, effectiveness of interventions, outcomes and the potential influences of personal resources, socio-cultural factors and environmental contexts. CONCLUSIONS: Research on (in)continence for PLWD in the community is under-developed and has not increased substantially over the last decade. ERG recommendations for future research included user involvement to identify appropriate quality indicators to assess the effectiveness of interventions. RELEVANCE TO CLINICAL PRACTICE: There is insufficient evidence on which to base decisions on continence care for PLWD in the community. Omission from continence care guidelines has the effect of marginalising and silencing this population. User involvement in clinical research and developing practice guidelines has the potential for positive systems change.