Public, patient and carers' views on palliative and end-of-life care in India.

AIM: To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. BACKGROUND: With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. METHODS: An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. RESULTS: Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. CONCLUSIONS: Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may promote nurse-led community models to address the patchy palliative and end-of-life service provision in India.

Realities and Challenges of a Five Year Follow Up of Mother and Child Pairs on a PMTCT Program in Zimbabwe.

BACKGROUND: Complete follow up is an essential component of observational cohorts irrespective of the type of disease. OBJECTIVES: To describe five years follow up of mother and child pairs on a PMTCT program, highlighting loss to follow up (LTFU) and mortality (attrition). STUDY DESIGN: A cohort of pregnant women was enrolled from the national PMTCT program at 36 weeks gestational age attending three peri urban clinics around Harare offering maternal and child health services. Mother-infant pairs were followed up from birth and twice yearly for five years. RESULTS: A total of 479 HIV infected and 571 HIV negative pregnant women were enrolled, 445(92.9%) and 495(86.6%) were followed up whereas 14(3.0%) and 3(0.5%) died in the 1st year respectively; RR (95%CI) 5.3(1.5-18.7). At five years 227(56.7%) HIV infected and 239(41.0%) HIV negative mothers turned up, whereas mortality rates were 34 and 7 per 100 person years respectively. Birth information was recorded for 401(83.7%) HIV exposed and 441(77.2%) unexposed infants, 247(51.6%) and 232(40.6) turned up in the first year whilst mortality was 58(12.9%) and 22(4.4%) respectively, RR (95%CI) 3.2(2.0-5.4). At five years 210(57.5%) HIV exposed and 239(44.3%) unexposed infants were seen, whilst mortality rates were 53 per 1000 and 15 per 1 000 person years respectively. Mortality rate for HIV infected children was 112 compared to 21 per 1 000 person years for the exposed but uninfected. CONCLUSION: HIV infected mothers and their children succumbed to mortality whereas the HIV negatives were LTFU. Mortality rates and LTFU are high within PMTCT program.