‘Quality of Life’ of Parents of Children Suffering from Pediatric Malignancies in a Low Income Setting

Bafna, Vineet; Bafna, Tanvi; Sampagar, Abhilasha; Rupavataram, Sunita Raman

doi:10.1007/s12098-018-2626-z

Cited by 4 publications

(2 citation statements)

References 8 publications

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“…Das et al assessed retrospective regret in parents of children who had died of cancer, finding that only 30% of these parents had chosen hospitals as end-of-life care locations for their children, with 62�5% of them regretting their decision [25]. Other issues included abandoning treatment and feeling angry over treatment [43].…”

Section: Plos Onementioning

confidence: 99%

Patient and caregiver perspectives of select non-communicable diseases in India: A scoping review

Nila,

Dutta,

Prakash

et al. 2024

PLoS ONE

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Background and objectives Patient-reported measures of encounters in healthcare settings and consideration of their preferences could provide valuable inputs to improve healthcare quality. Although there are increasing reports of user experiences regarding health care in India in recent times, there is a lack of evidence from Indian healthcare settings on the care provided for patients with chronic diseases. Methods We selected diabetes mellitus and cancer as representatives of two common conditions requiring different care pathways. We conducted a scoping review of studies reporting experiences or preferences of patients/caregivers for these conditions, in PubMed, Global Index Medicus and grey literature, from the year 2000 onwards. Both published and emergent themes were derived from the data and summarised as a narrative synthesis. Results Of 95 included studies (49 diabetes, 46 cancer), 73% (65) were exclusively quantitative surveys, 79% included only patients (75), and 59.5% (44) were conducted in government centres. Studies were concentrated in a few states in India, with the underrepresentation of vulnerable population groups and representative studies. There was a lack of standardised tools and comprehensive approaches for assessing experiences and preferences of patients and caregivers, concerning diabetes and cancers in India. The commonest type of care assessed was therapeutic (74), with 14 cancer studies on diagnosis and nine on palliative care. Repeated visits to crowded centres, drug refill issues, unavailability of specific services in government facilities, and expensive private care characterised diabetes care, while cancer care involved delayed diagnosis and treatment, communication, and pain management issues. Conclusions There is a need for robust approaches and standardised tools to measure responsiveness of the healthcare system to patient needs, across geographical and population subgroups in India. Health system reforms are needed to improve access to high-quality care for treatment and palliation of cancer and management of chronic diseases such as diabetes.

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Section: Plos Onementioning

confidence: 99%

Patient and caregiver perspectives of select non-communicable diseases in India: A scoping review

Nila,

Dutta,

Prakash

et al. 2024

PLoS ONE

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“…This accounts for addressing the existence of mental distress in these individuals and consequently, improving awareness and access to mental health facilities. 5,6 In view of this existing threat, the following study has been planned for baseline assessment of the quality of life of family caregivers, the impact on the health expenditure and its role in the medical devices industry during the COVID-19 pandemic in India.…”

Section: Introductionmentioning

confidence: 99%

The effect of COVID-19 pandemic on quality of life of family caregivers of chronically ill patients, health expenditure and home-based medical devices in India: a cross sectional study

Gupta¹,

Khurana²,

Sampagar³

2023

Int J Community Med Public Health

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Background: The novel coronavirus had a severe impact on India, with cases ranging from mild disease to severe multiple-organ failure syndrome. Caregivers of high-risk individuals face additional responsibilities that have detrimental effects on their mental and physical health. This study aimed to assess the quality of life of family caregivers, the impact on health expenditure, and the role of home-based medical devices during the pandemic in India. Methods: This retrospective study collected data from 358 participants using a validated caregiver self-assessment questionnaire and demographic details. The data were processed using the statistical tool chi-square, with p-value <0.05 considered significant, and analyzed using SPSS 11. The data is depicted using pie charts and bar diagrams. Results: 93.02% of our participants assumed a caregiver role. Among these, 58.26% reported mental distress. 7.21% of caregivers reported using telemedicine facilities, and 32% reported an increase in health-related expenditure in an attempt to provide better medical care to their loved one. More than 80% of the participants reported having a family member suffering from diabetes, while 70% reported old age or hypertension. Less than 10% had a loved one who was a pregnant woman or a frontline worker. Conclusions: The study highlights the significant impact of the COVID-19 pandemic on the mental health of family caregivers of chronically ill patients in India. The use of telemedicine facilities and the increase in health-related expenditure reflect the need for advancement in healthcare infrastructure in India.

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Impact of Pediatric Malignancies on Parent’s Quality of Life

Pushpam

Bakhshi

2018

Indian J Pediatr

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‘Quality of Life’ of Parents of Children Suffering from Pediatric Malignancies in a Low Income Setting

Abstract: SG had poorer QOL and were significantly more depressed, anxious and stressed. It is concluded that effective interventions are needed to aid these families to improve outcomes by delivering the benefit of vastly improved therapeutic strategies in this field.

Cited by 4 publications

References 8 publications

Patient and caregiver perspectives of select non-communicable diseases in India: A scoping review

Patient and caregiver perspectives of select non-communicable diseases in India: A scoping review

The effect of COVID-19 pandemic on quality of life of family caregivers of chronically ill patients, health expenditure and home-based medical devices in India: a cross sectional study

Impact of Pediatric Malignancies on Parent’s Quality of Life

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