“Small small interventions, big big roles”- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India

Background Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention. Methods A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis. Results Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients. Conclusion The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge

Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers

Background: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013–2015. Methods: A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013–2015. Results: While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013–15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months’ post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged < 60 years, received one or less visit annually from a doctor or have a serious mental illness. 96% of patients had a care-giver at home, 85% of these care-givers being female. Conclusions: The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one

A qualitative study on the mental health needs of elderly in Kerala, South India

Background: The proportion of elderly population in India is increasing and is the highest in Kerala. In an effort to review and modify the existing Old Age Policy, the state government deliberated on the need for elderly centered research. Aims: The aims of this study were to identify the unmet mental health (MH) needs of elderly population with attention to special groups such as widows and tribal population and to understand the gaps in delivery of MH services. Materials and Methods: A cross-sectional, qualitative study was undertaken in five districts of Kerala, selected purposively, ensuring representativeness, using 166 in-depth interviews and nine focus group discussions with elderly people from community and institutions and various key stakeholders. The interviews were transcribed and translated to English. Free listing of responses, domain identification, coding, summarization, and cross-tabulation were done. Semi-quantitative approach was used in analysis and presentation of report. Results: Depression, anxiety, insomnia, somatization, and dementia were the commonly reported MH problems in elderly people, especially institutionalized ones. Loneliness, isolation, neglect, and elder abuse were the major psychosocial issues identified. Poor social activities and interactions and poor utilization of MH services were also observed. Caregiver burden was found to be high and the available family support services were reported to be inadequate. Conclusions: MH problems were common in elderly, but utilization of MH services was low. This study highlights the need to improve accessibility, availability, and quality of MH services and family-support services for elderly

Barriers for involvement of private doctors in RNTCP – Qualitative study from Kerala, India

Introduction: Engaging the private sector effectively has been considered as the single most important intervention required for Revised National TB Control Program (RNTCP) to achieve the overall goal of universal access and early detection. This study attempts to identify the barriers and facilitators in the involvement of private practioners in signed schemes of RNTCP. Materials and Methods: Six focus group discussions - four among private sector doctors and two among RNTCP TB key workers and 10 key informant interviews were conducted. Themes were divided into private sector involvement in RNTCP, barriers for private sector involvement, facilitators for private sector involvement and suggestions for better PPP. Results: General feel was that private sector involvement in RNTCP was increasing. Public sector at ground level has not really understood the need to engage the private sector. Lack of capacity for public sector staff to understand and deal with private sector, power relations and not taking hospital managements to trust emerged as important barriers for engagement while private sector doctors expressed concerns over patient confidentiality and patient choices, apprehension of losing patients, inability of program to keep commitments and timely payments, poor recognition to private sector, bureaucratic hurdles and cumbersome formalities. Building locally customised partnership schemes, behaviour change for PPP, building managerial capacity of Public sector to deal with private sector, presence of an interphase agency and quality control through a participatory body were important suggestions for improvement of PPP. Conclusion: Strategies have to be formulated to customise partnership for private sector doctors using the flexibilities of the program. Strengthening PPP will be possible in presence of strong administrative will and the understanding that personal relationships are the best key to Public Private Partnerships

Population-based cancer screening through community participation: Outcome of a district wide oral cancer screening program from rural Kannur, Kerala, India

Background: Oral cancer is a major public health challenge, and about one-fifth of all oral cancer cases reported globally are from India. In spite of the potential for early detection by simple visual examination, the majority of patients report in later stages of the disease, especially in low and middle-income countries. We report the results from a district level population-based oral cancer screening program. Methods: A cross-sectional survey was carried out among people aged >15 years in 48 panchayats of Kannur district in Kerala, India. This comprehensive multi-stakeholder district-wide screening was carried out in six stages including planning, sensitization, recruiting of community volunteers and training, survey, organization of specialist camps and referring to cases to cancer center. The descriptive statistical analysis was performed using EpiData analysis software (Version 2.2.2.180). Results: Among the 1,061,088 people in 265,272 houses surveyed, 2507 of them attended the screening camps, and 13 oral cancers and 174 oral precancers were detected. Majority of the oral cancer patients were male (69%), with primary education or illiterate (62%) and low socioeconomic status (61%). Five of the patients diagnosed with early-stage cancer are alive and have good oral health-related quality of life. Conclusion: Detection of precancerous and early-stage cancers should be a priority of oral cancer screening programs. The possible key for addressing cancer screening needs of the rural population is to equip the primary health centers in cancer screening activities with available human resources while adapting to local context

Evaluation of trend and mortality pattern of communicable diseases in a teaching institution in Kerala

Context: Even in this era of epidemiologic transition communicable disease is still a major public health problem. Surveillance and timely prevention and control activities are the key to the reduction of morbidity and mortality of communicable diseases. Identifying the trend in communicable diseases and pattern of mortality for a period of ten years will be an insight into the ongoing surveillance. Aim: In this study we have analysed data from 2013 to 2022 to evaluate the trend and mortality pattern of communicable diseases in a teaching institution in Kerala. Settings and Design: A retrospective record-based cross-sectional study conducted at the Department of Community Medicine, Government Medical College, Kottayam. Methods and Material: All confirmed communicable disease cases reported from 2013 to 2022 were included in this study except COVID-19-positive cases. The communicable diseases were grouped as: airborne, waterborne, vector-borne, zoonosis, bloodborne diseases and others. SPSS version 20.0 software, Microsoft Word, and Excel were used in data handling and analysis. Results: Total cases reported were 48124. The majority of the morbidity was due to airborne diseases (17585,37%) followed by waterborne diseases (6381, 13%). The total number of deaths reported was 1842. Airborne and zoonotic diseases together accounted for more than 50% of the mortality. Case fatality rate of zoonosis (20.2%) was the highest followed by bloodborne diseases (10.2%). Conclusions: Communicable diseases still continue as a public health problem contributing to morbidity and mortality. Airborne diseases and zoonotic diseases constitute the maximum mortality

Genetic characterization of dengue virus serotypes causing concurrent infection in an outbreak in Ernakulam, Kerala, South India

849-857Dengue fever, a mosquito-borne viral infection, causes significant morbidity and has become endemic in the Indian subcontinent. Virus strains currently circulating in many parts of the country are not well studied at the molecular level. In the present study, genetic characterization of virus strains from a dengue outbreak that occurred in and around a tertiary care hospital in Ernakulam, Kerala in the year 2008 has been reported. By reverse transcription polymerase chain reaction (RT-PCR), 37 out of 75 (49.3%) clinically suspected cases were positive for dengue viral RNA. Among these, 21 (56.8%) samples showed concurrent infection with multiple serotypes of the virus. Majority of the combined infections were caused by dengue serotype 2 and 3. Co-infections with type 1 and 2 in two patients, and type 1, 2 and 3 in one patient were also observed. The core-pre-Membrane (CprM) junction nucleotide sequencing and phylogenetic analysis revealed that the type 1 strains were related to the viral strains reported from Delhi-2001 and Gwalior-2002 dengue outbreaks, while the type 2 strains were related to the strains from Gwalior-2001 epidemic. Sequences of type 3 strains did not show clear relation to any of the previous Indian isolates, and in the phylogenetic analysis, they formed a distinct lineage within the Indian type 3 strains. This study indicates hyperendemicity of dengue in the region with the presence of multiple serotypes and high rates of co-infection, and local genomic evolution of the viral strains involved in this outbreak

"They know, they agree, but they don't do"--the paradox of tuberculosis case notification by private practitioners in Alappuzha district, Kerala, India.

Despite being a recognized standard of tuberculosis (TB) care internationally, mandatory TB case notification brings forth challenges from the private sector. Only three TB cases were notified in 2013 by private practitioners compared to 2000 TB cases notified yearly from the public sector in Alappuzha district. The study objective was to explore the knowledge, opinion and barriers regarding TB Notification among private practitioners offering TB services in Alappuzha, Kerala state, India.This was a mixed-methods study with quantitative (survey) and qualitative components conducted between December 2013 and July 2014. The survey, using a structured questionnaire, among 169 private practitioners revealed that 88% were aware of mandatory notification. All patient-related details requested in the notification form (except government-issued identification number) were perceived to be important and easy to provide by more than 80% of practitioners. While more than 95% felt that notification should be mandatory, punitive action in case of failure to notify was considered unnecessary by almost two third. General practitioners (98%) were more likely to be aware of notification than specialists (84 %). (P<0.01). Qualitative purposive personal interviews (n=34) were carried out among private practitioners and public health providers. On thematic framework analysis of the responses, barriers to TB notification were grouped into three themes: 'private provider misconceptions about notification', 'patient confidentiality, and stigma and discrimination 'and 'lack of cohesion and coordination between public and private sector'. Private practitioners did not consider it necessary to notify TB cases treated with daily regimen.Communication strategies like training, timely dissemination of information of policy changes and one-to-one dialogue with private practitioners to dispel misconceptions may enhance TB notification. Trust building strategies like providing feedback about referred cases from private sector, health personnel visit or a liaison private doctor may ensure compliance to public health activities

Perspectives regarding mandatory TB Notification among private practitioners in in Alappuzha district of Kerala, India.

<p>Perspectives regarding mandatory TB Notification among private practitioners in in Alappuzha district of Kerala, India.</p