Palliative care delivery: descriptions of community-based services in Vellore, India, and Seattle, Washington.

BACKGROUND:: A public health approach to palliative care supports community-dwelling adults with advanced illness. A better understanding of successful community-based palliative care programmes and partnerships is needed to expand community-based services for ageing populations. AIMS:: This study describes two organisations in two different countries that provide health and social services to community-dwelling adults with advanced illness. METHODS:: Unstructured key-informant interviews and observational data were collected at the Christian Medical College's College of Nursing Community Health Programme (Vellore, India) and at Phinney Neighborhood Association Village (Seattle, Washington, USA). FINDINGS:: College of Nursing Community Health Programme nurses work with volunteer community health workers to identify and provide client-focused support to ensure quality-of-life. The Phinney Neighborhood Association Village is a volunteer-led organisation that provides social support. Both serve community-dwelling adults with advanced illness. CONCLUSION:: Partnerships between healthcare organisations and community volunteers support a public health approach to community-based palliative care.

The Effect of Entonox, Play Therapy and a Combination on Pain Relief in Children: A Randomized Controlled Trial.

Pediatric pain is often undertreated/neglected due to time constraints, difficulties in timing of oral analgesics, fear of side effects of opioids and anxiolytics, and apprehension of additional pain in the use of local anesthetic injections. In this study, the researcher was prompted to choose rapidly acting interventions that were low dose and allowed the child to stay alert, suitable for a quick discharge. The purpose of this study was to evaluate the effects of Entonox, play therapy, and a combination to relieve procedural pain in children aged 4-15 years. The study was designed as a randomized controlled trial; the subjects were divided into four groups using a sequential allocation plan from 123 total subjects. Group A received Entonox, Group B received play therapy, Group C received both Entonox and play therapy, and Group D received existing standard interventions. The study was vetted by the departmental study review committee. The pain level was assessed using FLACC scale for children aged 4-9 years and the Wong Bakers Faces Pain Scale for children aged 10-15 years; scores ranged from 0 to 10. All the data were analyzed using SPSS 16.0 with descriptive statistics and, inferential statistics. The mean pain scores were as follows: Entonox group, 2.87; Play therapy group, 4; combination group, 3; and control group, 5.87. When statistical testing was applied, a significant reduction in the pain score in all the three experimental groups when compared to the control group was found (p = .002), but not in the pain score among the three experimental groups (p = .350). The findings of this study indicated that all three interventions were effective in lowering pain scores when compared to the control group. Play therapy is as potent as Entonox in relieving procedural pain, though there was no additive effect on pain relief when play therapy and Entonox were combined. A protocol for age-related choice between play therapy and Entonox administration was introduced as a standing order in the Pediatric Surgery department for acute procedural pain relief.

Parenting under pressure: a grounded theory of parenting young children with life-threatening congenital heart disease.

AIM: To report a grounded theory study to describe the process of parenting young children who have survived hypoplastic left heart syndrome to inform parent-focused interventions. BACKGROUND: Technological advances in paediatric cardiology worldwide have improved the survival rates for young children with hypoplastic left heart syndrome who undergo staged surgical palliation. These children, however, are at risk for life-threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home. DESIGN: A constructivist grounded theory study. METHOD: The study was conducted in 2006-2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months-4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing. FINDINGS: A process of Parenting under Pressure emerged that was characterized by four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges. CONCLUSIONS: In-depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands.

Occupational Satisfaction of Public Hospital Nurses in India: A Qualitative Explorative Study.

AIM: This study aimed to explore occupational satisfaction experienced by nurses working in a public hospital. METHOD: Qualitative approach was used to explore experiences toward occupational satisfaction among 16 nurses working in different units of a selected public hospital in Tamil Nadu, South India. A semi-structured interview guide facilitated the individual in-depth face-to-face interviews, which were audio-recorded and transcribed verbatim. Thematic approach was used for data analysis and data management was performed using NVIVO-12 software. RESULTS: The two major themes that emerged as nurses' experiences on occupational satisfaction were "Quality patient care rendering and responses" and "Professional opportunities and responsibility." The sub-themes under quality patient care rendering and responses were patient care environment, team dynamics, leadership, and patient's health status. The sub-themes under professional opportunities and responsibility were pay and promotion, professional growth, and recognition. CONCLUSION: The findings help us understand the various facilitating and hindering challenges nurses face in occupational satisfaction. It also emphasizes the organization's focus on modifiable factors in the working environment, enhancing satisfaction, and helping the nurses work more effectively and efficiently to deliver quality nursing care. Nursing administration in every healthcare setting should focus on strategies to improve nurses' professional development.

UDHAVI Community Support During India's Second COVID-19 Wave: A Descriptive Study on a Tertiary Care Center's Pandemic Response Helpline.

BACKGROUND: In April 2021, during the peak of the second wave of the COVID-19 pandemic in India, hospitals overflowed with COVID-19 patients, and people hesitated to seek necessary care due to fear of contracting the disease. The UDHAVI helpline was set up by a tertiary care hospital in Vellore with the help of district administration, nongovernmental organizations, and various supporting agencies to provide general information, medical advice, counseling, and logistics support to the community. METHODS: This is a retrospective study of all the phone calls made to the UDHAVI helpline between mid-May and mid-June 2021 during the second wave of the COVID-19 pandemic. The calls were electronically captured as part of the process, and the information was subsequently retrieved and analyzed. RESULTS: In all, 677 calls were received. The lines for general information, medical advice, counseling, and logistics support received 168 (25%), 377 (56%), 15 (2%), and 117 (17%) calls, respectively. Home care kits, oxygen concentrators, and food were delivered by volunteers from local nongovernmental organizations and hospitals. CONCLUSION: We believe the details of our experience would be useful in the preparedness and mobilization of resources in the event of any public health emergency. As a result of this initiative, we propose an integrated partnership model for emergency response to any pandemic situation.

The process of family management when a baby is diagnosed with a lethal congenital condition.

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data analysis of 55 previously conducted interviews with mothers and fathers of children with a lethal congenital condition from two surgical treatment eras. The directed content analysis was guided by a coding structure developed from family management dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant's illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents' capacity to manage their baby's illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.

Impact of the Lockdown on Patients Receiving Maintenance Hemodialysis at a Tertiary Care Facility in Southern India - A Mixed-methods Approach.

Aims: The mass quarantine measures adopted to control the COVID-19 pandemic greatly impacted the lives of patients on haemodialysis in India. We used a mixed methods approach to study its effect on dialysis outcomes and the lived experience of haemodialysis patients during the lockdown. Methods: Quantitative data was collected from 141 subjects using a structured proforma to determine the impact of the lockdown on dialysis outcomes and travel expenses. Qualitative data collected through in-depth interviews with 9 patients by purposive sampling were recorded and transcribed to explore the lived experience of haemodialysis patients during lockdown. The cohort was followed up till October 31st 2020 for incidence of COVID-19, deaths, and dropouts. Results: The median increase in per day travel expense was 25%. Due to decrease in dialysis frequency, patients previously on thrice weekly haemodialysis experienced significant increase in pre-dialysis systolic blood pressure (P = 0.005) compared to those on twice weekly haemodialysis. Between March 25th and July 15th 2020, 12 patients (8.5%) required emergency dialysis sessions, and 4 patients (2.8%) required admissions for hypertensive emergencies. Four main themes emerged from thematic analysis of transcribed interviews: Travel inconveniences, uncertainty resulting in anxiety, financial burden and frequency change in dialysis leading to worsening of symptoms. Twenty-two patients (15.6%) were diagnosed with COVID-19, the first case diagnosed 33 days after the first 'unlock' phase. Conclusion: The lockdown was successful in delaying infection transmission but had unintended physical and psychosocial effects on haemodialysis patients.

Grandparents and siblings of children with congenital heart disease.

AIM: This paper is a report of a study of the process of grandparent involvement with siblings of preschool children with hypoplastic left heart syndrome. BACKGROUND: An increasing number of grandparents are involved in parental or near-parental roles with their grandchildren. Most research concerns grandparent involvement due to parental issues (e.g. teenage pregnancy, mental illness, addiction). Some research addresses grandparent involvement when their grandchild is ill. Grandparents''double concern' for both their adult children and their ill grandchildren is reported in the literature. In this paper, we describe a third concern for grandparents: the sibling(s) of their sick grandchild. METHOD: Individual interviews were conducted in 2007 with 15 grandparents of six preschool children with complex congenital heart disease. Open and selective coding, categorization, and theoretical memoing were used to analyse the data. FINDINGS: 'Stepping in as needed' and 'safeguarding relationships' were identified as two core categories related to grandparenting siblings of children with heart disease. Grandparents stepped into a parent role with toddler and preschool-aged siblings by attending to their daily care routines, recreational and play times, and relational needs while parents were occupied with their sick and hospitalized infants. Grandparents' concerted efforts to sustain parent-child and child-sibling relationships were also striking. CONCLUSION: Our findings extend the concept of 'double concern' to 'triple concern', and direct a research and practice focus towards the unexplored roles and needs of grandparents and siblings in families whose young children have life-threatening illnesses.

Embracing survival: a grounded theory study of parenting children who have sustained burns.

The positive effect of supportive family environment on burn-injured child's long term outcome is well established. How parents provide this support as they recover with their children is not addressed especially in low and middle income countries where the burn burden is high. It is assumed that parents are non-compliant in bringing their children for follow up. Using grounded theory methodology this study aimed to explore and discover the process of parenting children in India with burn injury. Semi-structured interviews with 22 family members of 12 burn-injured children and field notes yielded rich data. The analysis by open and focused coding and constant comparisons of participants' accounts revealed a parenting process of embracing survival. For parents embracing survival involved (1) suffering the trauma along with their burn-injured child, (2) sustaining the survival of their child, and (3) shielding the child from stigma related to scarring and disfigurement. Parents perceived minimal support from health professionals and family members. Mothers and fathers formed a team and did their best for their burn-injured children. Assessing and meeting the needs of the parents and empowering parents to provide effective long term care are vital components of burn care. The health professionals' perceptive on parenting burn-injured children need to be explored.

Parenting burn-injured children in India: a grounded theory study.

BACKGROUND: Burn injury is one of the major traumas that a child can experience. Parents of burn-injured children experience anxiety, depression, guilt and post traumatic stress disorders as they care for their burn-injured children. Such empirical evidence related to effects of burns on parents and parenting process is unavailable from low and middle income countries like India. OBJECTIVES: The aim of the study was to discover the process of parenting burn-injured children in India. The objective of this paper is to present one of the substantive processes "Enduring the Blame" that emerged from the data. DESIGN: Constructivist grounded theory methodology was used to explore the experiences of parenting burn-injured children. SETTING: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. PARTICIPANTS: Nine mothers, nine fathers, three grandmothers and one aunt from 12 families of children who were 15 years or younger and had sustained greater than 20% total body surface burns were purposively included. METHODS: Twenty-two semi structured individual or family interviews were conducted in Tamil over a period of one year. The interview started with an overview question and then was followed by trigger questions as the participants shared their experiences. Second interviews were conducted with three participants in three families for theoretical saturation purposes. RESULTS: Mothers and fathers encountered blame from family members, health professionals, strangers, and their burn-injured children along the burn injury trajectory. They suffered double trauma of their child's burn and the blame. Parenting their burn-injured child involved a process of "Enduring the Blame." Enduring the Blame included four stages: internalizing blame, submitting to blame, rising above blame, and avoiding blame. CONCLUSIONS: Encouraging and assisting parents in caring for their children instead of blaming is a vital component of paediatric burn care. Parents will benefit from ongoing assessment and psychological interventions that will provide emotional support. Studying the perceptions of health professionals and the burn-injured children will help in further clarification of blame related issues and developing a parenting theory.

Facets of parenting a child with hypoplastic left heart syndrome.

The purpose of the study was to conceptualize the needs of parents of young children with hypoplastic left heart syndrome (HLHS) to provide a theoretical framework to inform the development of future parent interventions. Participants were parents and grandparents (n = 53) of 15 young children who had undergone the Sano surgical approach for HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, "hands-off" parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational or psychosocial intervention for parents.

Demographics of pediatric burns in Vellore, India.

The American Burn Association, Children's Burn Foundation, and Christian Medical College in Vellore, India have partnered together to improve pediatric burn care in Southern India. We report the demographics and outcomes of burns in this center, and create a benchmark to measure the effect of the partnership. A comparison to the National Burn Repository is made to allow for generalization and assessment to other burn centers, and to control for known confounders such as burn size, age, and mechanism. Charts from the pediatric burn center in Vellore, India were retrospectively reviewed and compared with data in the American Burn Association National Burn Registry (NBR) for patients younger than 16 years. One hundred nineteen pediatric patients with burns were admitted from January 2004 through April 2007. Average age was 3.8 years; average total body surface area burn was 24%: 64% scald, 30% flame, 6% electric. Annual death rate was 10%, with average fatal total body surface area burn was 40%. Average lengths of stay for survivors was 15 days. Delay of presentation was common (45% of all patients). Thirty-five of 119 patients received operations (29%). Flame burn patients were older (6.1 years vs 2.6 years), larger (30 vs 21%), had a higher fatality rate (19.4 vs 7.7%), and more of them were female (55 vs 47%) compared with scald burn patients. Electric burn patients were oldest (8.3 years) and all male. When compared with data in the NBR, average burn size was larger in Vellore (24 vs 9%). The mortality rate was higher in Vellore (10.1 vs 0.5%). The average mortal burn size in Vellore was smaller (40 vs 51%). Electric burns were more common in Vellore (6.0 vs 1.6%). Contact burns were almost nonexistent in Vellore (0.9 vs 13.1%). The differences in pediatric burn care from developing health care systems to burn centers in the US are manifold. Nonpresentation of smaller cases, and incomplete data in the NBR explain many of the differences. However, burns at this center in Vellore, India were larger, and occurred to younger patients than burns that reported in the NBR. Individualized assessment of care systems are needed when implementing development plans.