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Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Studies from developed countries show the prevalence of permanent childhood hearing loss to be 1 to 2 per thousand children. The estimated number of Ear, Nose, and Throat (ENT) specialists and otologists in India were 7000 and 2000. There is a great need for trained CI surgeons to care for that burden. Currently, only a handful of centres in the country provide CI training. This study aims to put together essential and desirable requisites for a clinical fellowship in CI surgery for ENT surgeons. A questionnaire was prepared and validated by 25 senior CI surgeons in India. Then the sixteen-question questionnaire was prepared and administered to 100 practising CI Surgeons (Group A) and 100 probable CI Fellowship Candidates (Group B). Group B involved surgeons currently pursuing their ENT post-graduation or have completed their postgraduate training and are inclined towards otology and CI surgery in the future. The responses ranged from 1 (Strongly Disagree) to 5 (Strongly Agree) on a Likert Scale. The responses from both groups were analyzed, and statistical analysis was performed using SPSS(Statistical Package for the Social Sciences) software. The results were analysed and tabulated from both groups. The weighted mean response and mean opinion to all the questions were calculated for both groups. Based on the response, "Essential" and "Desirable" criteria are given. [ABSTRACT FROM AUTHOR]

Among other various inequalities, division of work is seen as a potential powerful equalizer. The formulation of policies supporting equality in work should be considered when there is a motive for holistic development amid the socio-economic downturn. Novel Coronavirus Disease (COVID-19) in India suggests that females are at a greater disadvantage than males in sharing crisis distress and securing jobs. A direct effect of the shift in the institutional provisions on the household is like an increasing care burden, eventually decreasing the time autonomy. Preventive measures of social distancing during lockdown have curtailed the demand for such labour and services. This study discusses the challenges of female care workers-paid and unpaid, in COVID- 19 and the need for policy interventions as pandemic relief measures. [ABSTRACT FROM AUTHOR]

This study aimed to analyze the relationship between the caregiver burden, death obsessions, and somatic symptoms; and whether the death obsessions are playing a mediating role in the relationship between the caregiver burden and somatic symptoms. The study was done on the informal dementia caregivers residing in India. Three questionnaires in a google form were circulated. The correlational and mediation analysis revealed that there was a significant and positive correlation between the caregiver burden, death obsessions, and somatic symptoms. Further, the death obsessions significantly mediated the relationship between caregiver burden and somatic symptoms. [ABSTRACT FROM AUTHOR]

Dementia is a chronic disorder of the brain that affects cognitive performance. The caregivers of individuals with dementia experience a greater burden that affects their Quality of Life (QoL). This cross-sectional study conducted in India was designed to assess the caring burden and QoL among the caregivers of people with dementia, as well as to ascertain the relationship between QoL scores and burden. Our sample included 80 caregivers of people with dementia. Most of the caregivers (n = 59, 73.8%) had a higher level of caregiver burden. There was a negative correlation between caregiver burden scores and QoL. A higher level of caregiver stress and low QoL were experienced by caregivers of dementia patients. In developing countries like India, counseling, and education on home health care for people with dementia should be provided to reduce the burden and enhance the QoL of caregivers. [ABSTRACT FROM AUTHOR]

Childhood mental health problems demanded a holistic care approach from the health professional and family caregivers. Children under 15 years of ageconsist of roughly 33% of the total populace and around 5 to 15% of them are disabled with behavioural problems and their caregiver’s mental health is under great threat. Family caregivers play a crucial role in managing and caring for these patients. So, the researchers conducted a narrative review regarding caregiver’s stress, quality of life, burden and coping mechanism of children with behavioural disorder. The original research papers from different countries were searched through the electronic databases, Pro-Quest, Embase, Pub Med, Psyche ARTICLES, EBSCO, Research Gate, EORTC, Scopus etc. A total of 464 articles were retrieved from search engines. Finally, 15 articles were included in the review. Evidence of research work on attention deficit hyperactive disorder (ADHD) were plenty. The dearth of literature in Eastern India concerning caregiver’s psychological health was surveyed. Mothersexperienced high stress than the stress level in fathers. Family caregivers had poor quality of life, higher financial burden and find it hard to cope with the adverse situation. Interventional study results revealed that stress, depression and burden were significantly diminished after need-based education programs, coping skill training etc. Family care approach and need for interventional studies were recommended.The outcome of the reviewcan be incorporated into nursing research to empower the family caregivers. [ABSTRACT FROM AUTHOR]

Background: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. Methods: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. Results: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854–0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907–0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912–0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970–0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. Conclusion: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala. [ABSTRACT FROM AUTHOR]

Background: Cancer incidence and mortality vary across the globe, with nearly two-thirds of cancer-related deaths occurring in low- and middle-income countries. The rural-urban disparity in socio-demographic, behavioural, and lifestyle-related factors, as well as in access to cancer care, is one of the contributing factors. Population-based cancer registries serve as a measure for understanding the burden of cancer. We aimed to evaluate the rural-urban disparity in cancer burden and care of patients registered by an Indian population-based cancer registry. Methods: This study collected data from Varanasi, Uttar Pradesh, India, between 2017 and 2019. Sex and site-specific age-standardised rates for incidence and mortality per 100,000 population were calculated. Rural-urban disparities in cancer incidence and mortality were estimated through rate differences and standardised rate ratios (with 95% confidence intervals). Univariable and multivariable regressions were applied to determine any significant differences in socio-demographic and cancer-related variables according to place of residence (rural/urban). Crude and adjusted odds ratios with 95% confidence intervals were calculated. Results: 6721 cancer patients were registered during the study duration. Urban patients were older and had better literacy and socioeconomic levels, while rural patients had higher odds of having unskilled or semi-skilled professions. Diagnostic and clinical confirmation for cancer was significantly higher in urban patients, while verbal autopsy-based confirmation was higher in rural patients. Rural patients were more likely to receive palliative or alternative systems of medicine, and urban patients had higher chances of treatment completion. Significantly higher incidence and mortality were observed for oral cancer among urban men and for cervical cancer among rural women. Despite the higher incidence of breast cancer in urban women, significantly higher mortality was observed in rural women. Conclusions: Low- and middle-income countries are facing dual challenges for cancer control and prevention. Their urban populations experience unhealthy lifestyles, while their rural populations lack healthcare accessibility. The distinctness in cancer burden and pattern calls for a re-evaluation of cancer control strategies that are tailor-made with an understanding of urban-rural disparities. Context-specific interventional programmes targeting risk-factor modifications, cancer awareness, early detection, and accessibility to diagnosis and care are essential. [ABSTRACT FROM AUTHOR]

Cancer care poses a significant economic burden in India, where noncommunicable diseases contribute to a large number of deaths and disability-adjusted life-years. Despite economic growth, equitable wealth distribution remains a challenge, leading to inequalities in healthcare access. India's healthcare system is primarily privatized, financed through out-of-pocket expenditure (OOPE), and lacks coverage for a majority of the population. As a result, individuals without financial means face catastrophic health consequences when seeking necessary healthcare. OOPE in India's healthcare system is a major concern, with medicines accounting for a significant portion of expenses, followed by diagnostic tests and consultation fees. Nonmedical expenses also contribute to the financial burden. Cancer care specifically faces substantial financial challenges, with high treatment costs, reduced workforce participation, and the need for distress financing. Cancer-related OOPE is predominantly borne by patients and their families, leading to significant financial strain. The lack of comprehensive health insurance coverage and limited access to publicly funded healthcare services exacerbate the problem. Catastrophic health expenditure (CHE) in cancer care is prevalent, pushing households into financial distress and potentially impoverishment. Efforts have been made to address this issue, such as increasing public spending on healthcare and implementing health insurance schemes. However, challenges remain in ensuring their effectiveness and reach. The role of family care physicians is crucial in supporting patients and their families during catastrophic health expenditures related to cancer-related palliative care. They coordinate care, provide advocacy, emotional support, symptom management, and facilitate end-of-life discussions. Comprehensive measures are needed to strengthen healthcare infrastructure, improve access to affordable cancer care, enhance health insurance coverage, and implement supportive measures for cancer patients. Additionally, promoting preventive measures and early detection can help reduce the need for expensive treatments and decrease the risk of catastrophic health expenditures. [ABSTRACT FROM AUTHOR]

Background: People with disabilities are vulnerable because of the many challenges they face attitudinal, physical, and financial. The National Policy for Persons with Disabilities (2006) recognizes that Persons with Disabilities are valuable human resources for the country and seeks to create an environment that provides equal opportunities, and protection of their rights, and full. There are limited studies on health care burden due to disabilities of various types. Aim: The present study examines the socioeconomic and state-wise differences in the prevalence of disabilities and related household financial burden in India. Methods: Data for this study was obtained from the National Sample Survey (NSS), 76th round Persons with Disabilities in India Survey 2018. The survey covered a sample of 1,18,152 households, 5,76,569 individuals, of which 1,06,894 of had any disability. This study performed descriptive statistics, and bivariate estimates. Results: The finding of the analysis showed that prevalence of disability of any kind was 22 persons per 1000. Around, one-fifth (20.32%) of the household's monthly consumption expenditure was spent on out-of-pocket expenditure for disability. More than half (57.1%) of the households were pushed to catastrophic health expenditure due to one of the members being disabled. Almost one-fifth (19.1%) of the households who were above the poverty line before one of members was treated for disability were pushed below the poverty line after the expenditure of the treatment and average percentage shortfall in income from the poverty line was 11.0 percent due to disability treatment care expenditure. Conclusion: The study provides an insight on the socioeconomic differentials in out-of-pocket expenditure, catastrophic expenditure for treatment of any kind of disability. To attain SDG goal 3 that advocates healthy life and promote well-being for all at all ages, there is a need to recognize the disadvantaged and due to disability. [ABSTRACT FROM AUTHOR]

Research on dementia literacy in Chinese societies is still emerging, and this is especially the case among racially minoritized groups. The present study explored the knowledge, causal beliefs, and help-seeking behaviors of South Asian migrants in Hong Kong about dementia. It also investigated existing community barriers related to dementia knowledge and help-seeking. We conducted a qualitative study from a purposive sample of 38 older people and family caregivers from India, Pakistan, and Nepal who lived in Hong Kong. Focus groups and individual in-depth interviews were used to gather information, while thematic analysis was employed to analyze the data. Five main themes were identified: normalization with stigmatization of dementia; spiritual and psychosocial attributions of dementia; familial responsibility despite potential caregiving burden; uncertainties versus openness to professional care; and barriers and opportunities in dementia literacy. Ethnic minorities recognized dementia as a disease of normal aging or a mental disorder. They also perceived spiritual and psychosocial factors as their main causes. While participants recognized the potential burden of dementia caregiving, families were their first point of help-seeking, as many of them expressed contrasting feelings of confidence or doubt toward professional services. Utilization of health education strategies, together with collaboration with community leaders, could address the barriers to dementia literacy. This is the first study to explore how ethnic minorities in Asia perceive dementia and its related help-seeking behaviors in their communities. South Asian migrants in Hong Kong have a limited understanding of dementia and may experience delays in obtaining relevant community services. While culture influenced their knowledge, health education may address their misperceptions and help-seeking behaviors toward dementia. Culture- and language-specific programs could also improve dementia knowledge and health service access. [ABSTRACT FROM AUTHOR]

Background: Alcohol use disorder (AUD) affects not just the individual who uses it but also their family, especially the primary caregivers. Avoidance, discord, fearful withdrawal, problem-focused, and emotionally focused coping styles are generally identified among families of alcoholics. There are very few studies regarding the primary caregiver's burden and coping with AUD patients in India. This study aims to assess the level of caregivers' burden and coping among primary caregivers of persons with AUD. Aim: The present study primarily aims to assess the level of caregiver burden, coping, and general health among the primary caregivers of a person with AUD. Materials and Methods: This is a crosssectional descriptive study conducted in a psychiatry tertiary care hospital. The total sample size was 70, chosen through the non-probability purposive sampling method. The socio-demographic profile of AUD patients and their primary caregivers was assessed using a semi-structured proforma. The burden and coping of the primary caregiver were assessed using the Burden Assessment Schedule and Brief COPE, and the general health questionnaire (GHQ) scale. Results: Primary caregivers of subjects with AUD faced a moderate (28.6%) to severe (71.4%) burden and had low coping strategies. The severity of alcohol use, caregiver general health, caregivers' burden, and coping strategies were shown to be statistically significant between different variables. Conclusion: The study concluded that the burden level on the primary caregivers of AUD was moderate to severe. The coping strategies of caregivers of AUD were found to be poor. [ABSTRACT FROM AUTHOR]

This study evaluated the impact on caregiver strain and family empowerment among caregivers of children with disabilities who received training and education as part of a family-centred community-based early intervention programme in South India. This prospective open cohort longitudinal study compared change from baseline to two years post-intervention among caregivers of the first cohort of children who were enrolled in the programme. Paired t-tests determined effect on the Modified Caregiver Strain Index (MCSI) and Family Empowerment Scale (FES), and p-values were adjusted for multiple comparisons using the False Discovery Rate approach. Of the 308 caregivers (91% women), 44% provided care to children with cerebral palsy and 56% to children with other developmental delays. The mean age of the children at baseline was 3.3 (±1.5 years). The overall mean change from baseline in the FES was 4.1 (95% CI: 3.3, 4.9; p < 0.001) representing improved empowerment. The mean change for the MCSI score was −3.7 (95% CI: −4.5, −2.9; p < 0.001) representing reduced caregiver strain. A family-centred early intervention programme that provides training and education to caregivers of children with developmental delays demonstrated positive change in caregiver strain and family empowerment. The well-being of a child is influenced by the well-being of their caregiver. Improving caregiver well-being can help improve care and support for children with developmental delays. A family-centred early intervention therapy programme that includes training and education to caregivers can reduce strain and improve family empowerment. [ABSTRACT FROM AUTHOR]

This research illustrates the diverse parenting roles and responsibilities assumed by mothers while caring for and facilitating the development of their children with Developmental Disabilities (DDs) and associated Complex Communication Needs (CCNs) in South India. Data collected during a participatory action research (PAR) project to develop and evaluate a communication partner training program for parents of children with DDs and CCNs, were analyzed to understand diverse parenting roles and how they relate to early intervention. Applied Thematic Analysis showed that mothers assume various roles as tutors, case managers, disciplinarians, nurses, and orchestrators of home training. Reasons for taking uncommon roles and responsibilities included filling gaps in services and facilitating the habilitation journey of their children with DDs. Role conflicts, role strains, and role overload experienced by participant mothers while trying to parent and provide intervention for their children with DDs were identified. This study draws from the perspective of the mothers themselves to provide a unique depiction of their roles navigating habilitation care for their children with Developmental Disability (DD) in India. Data illustrated socio-cultural and historical perspectives, beliefs, values, and practices regarding the mothers' role in children's habilitation and development. The typical maternal roles identified included a tutor, nurse, and disciplinarian in line with existing research. However, the magnitude of responsibilities associated with these roles while caring for a child with developmental disabilities in the local context with limited resources was challenging. Additional roles mothers played included being a case manager for their children and providing home therapy. The participant mothers experienced role overload, role strain, and role conflicts in discharging their many responsibilities. The need for parents to receive formal and informal support in order to improve their personal quality of life and that of their children is identified. [ABSTRACT FROM AUTHOR]