Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Collaboration; Child; Pain; Hospitals Pediatric; Critical Illness; Female; Male; Palliative Care; Quality of Life; Questionnaires; Needs Assessment; Data Collection; Cognition; Health Services Accessibility; Education; Community Health Services; Program Implementation; Child Advocacy; Human; India; Symptoms; Administration; International Agencies; Licensure; Pediatric Care; Only Child; In Infancy and Childhood; Academic Performance; Health and Welfare Planning; Health Facility Administrators; Personnel Health Facility; Psychosocial Functioning; Teamwork
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010--March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
Muckaden MA; Ghoshal A; Talawadekar P; Marston JM; Paleri AK
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener">10.25259/IJPC_20_2021</a>
Evaluating the Need for Integrated Pediatric Palliative Care Services in a Pediatric Oncology Setting: A Retrospective Audit
Childhood cancer; Pediatric oncology; Pediatric palliative care; Early integration
OBJECTIVES: Early integrated palliative care has shown to improve the quality of life in patients with cancer. During the past decade, pediatric palliative care has become an established area of medical expertise, however due to scant information available regarding the triggers for referral and referral practice very few children receive a formal palliative care consult. MATERIALS AND METHODS: A retrospective audit of medical case records of pediatric oncology patients over a period of 1 year from September 30, 2019, to September 30, 2020, was conducted. Demographic details, diagnosis, staging, clinical parameters, reason for referral, and palliative care plan were captured in a predesigned pro forma. RESULTS: Among 126 children with cancer, 27 (21.4%) patients were referred to palliative care. Majority 21 (77%) referrals were inpatient consults. Symptom management 17 (44.7%) was the most common trigger for referral followed by referrals for psychosocial support 12 (14.4%). Children with solid tumors 16 (59%) were more often referred than hematological malignancies. Among those needing end of life care, 8 (88.8%) out of 9 families preferred home than hospital. CONCLUSION: Low incidence of palliative care referral and presence of symptoms as a trigger for palliative care referral suggests gaps in the integrated approach. The study findings prompt a review of palliative care referral criteria and referral practice in a pediatric oncology setting.
Bhat KV; Rao KS; Vijayasekharan K; Venkatagiri AM; Ashwini S; Singhai P; Rao SR; Gupta M; Salins N
Indian Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_460_20" target="_blank" rel="noreferrer noopener">10.25259/ijpc_460_20</a>
Correlation of Pediatric Palliative Screening Scale and Quality of Life in Pediatric Cancer Patients
quality of life; pediatric; Palliative; Paediatric Palliative Screening scale
CONTEXT: Palliative care in children is used to be only intended for those in near end-of-life phase. Ideally, palliative intervention should be given since the first time of cancer diagnosis. Palliative care is introduced from the beginning of the treatment by acknowledging that it helps to ensure an ongoing focus on the quality of life (QOL) so that children still can enjoy their life. Several approaches have been used to identify children with the need of palliative care. AIMS: The aim was to describe the use of Paediatric Palliative Screening Scale (PaPaS Scale) and its depiction to the QOL of children with malignancies. SETTINGS AND DESIGN: A cross-sectional study was conducted in sixty children age 2-18 years with malignancies, who were consulted to the palliative team. SUBJECTS AND METHODS: Sixty participants were recruited randomly during the study. PaPaS Scale and QOL (using PedsQL™ cancer module 3.0) were assessed at the same time. Cutoff points of 67 for parent-proxy report and 68.9 for self-report were used, those who have scores <67 and <68.9 were grouped as low QOL group. PaPaS scale was divided into three groups: (1) no palliative care needs (score 10-14), (2) considered palliative care (15-24), and (3) need for palliative (≥25). STATISTICAL ANALYSIS: Differences between palliative score and QOL were analyzed using Chi-square and Fisher test. RESULTS: Children who have lower QOL based on parent-proxy report (<67) included 25 children; they consist of 16 children (64%) with score 10-14, four children (16%) with score 15-24, and five children (20%) with score ≥25. Children with higher QOL (16 children) consist of ten children (62.5%) with score 10-14, four children (25%) scores 15-24, and two children (12.5%) with score ≥25. In the self-report, children with low QOL (eight children) consist of four children (50%) with score 10-14, four children (50%) with score 15-24, and no children with score ≥ 25. Children with higher QOL (11 children) consist of eight children (72.2%) with score 10-14, two children (18.2%) with scores 15-24, and one child (9.1%) with score ≥25. Statistical analysis showed no correlation between PaPaS score and QOL of children with malignancies in parent-proxy report (P = 0.89) and self-report (P = 0.37). CONCLUSIONS: This study showed that children with malignancies already had lower QOL despite the low PaPaS scale they had. The results of this study support the provision of early palliative intervention, starting with a small proportion of intervention to improve the QOL of cancer child.
Andriastuti M; Halim PG; Kusrini E; Bangun M
Indian Journal of Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.4103/ijpc.ijpc_197_19" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_197_19</a>
Implementation Science of Paediatric Palliative Care in Lower-Middle-Income Countries in Southeast Asia: An Integrative Review
Adoption; Health science; Innovation; Knowledge translation; Patient care
There is an ongoing development in the paediatric palliative care (PPC) program in Southeast Asia (SEA). However, the implementation process has not been clearly understood among lower-middle-income countries (LMICs) in this region. The purpose of this paper is to review and synthesise research about the implementation process of 7 identified LMICs in the SEA: Cambodia, Indonesia, Myanmar, Lao PDR, the Philippines, Timor-Leste, and Vietnam. An integrative review utilising Whittemore and Knafi's five-stage process was employed. Electronic searches of CINAHL, Web of Science, ProQuest, and Google Scholar (no year restriction) were conducted. From the 7599 articles retrieved, only 11 met the eligibility criteria. Each article was appraised for methodological quality (QualSyst tool and AACODS checklist) and constant comparison methods were used. Two overarching themes emerged in this review - the gaps in PPC standards, practice framework, and guidelines and the PPC challenges and implementation strategies. Understanding the implementation science of PPC among LMICs in the SEA region addresses the gap between idealism and realism. It provides reliable information in the development of strategic work plans that will improve the implementation process and promote the translation of EBIs into practice significant to the quality of paediatric patient outcomes.
Maniago JD; Ngaya-An FV
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_410_20" target="_blank" rel="noreferrer noopener">10.25259/ijpc_410_20</a>
Evaluation of Care Providers' Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019
Palliative care; Hospice care; Nurse; Attitude; Perinatal care
OBJECTIVES: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2019. In addition, the challenges of providing palliative care from the perspective of these individuals have been examined. MATERIALS AND METHODS: In this descriptive study, the research population was selected through convenience sampling based on the inclusion criteria. To assess care providers' attitude toward the perinatal palliative care and the challenges of its implementation, in addition to the questionnaire of demographic characteristics, a researcher-made questionnaire was also used. RESULTS: Most of the care providers (90.5%) believed that parents should be involved in decision-making to select the treatment type. Most of the care providers (90%) believed that the lack of prepared infrastructures is one of the major challenges in providing these types of care. CONCLUSION: Care providers have almost positive attitudes toward the various dimensions of providing perinatal palliative care, but it has not been properly implemented yet due to the insufficient knowledge of this type of care, the lack of required infrastructures (appropriate conditions in NICUs to provide this type of care, the sufficient number of staff and experts in this field), as well as the health authorities' neglecting this type of care.
Mohammadi A; Tahmasebi M; Mojen LK; Rassouli M; Ashrafizadeh H
Indian Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_90_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_90_21</a>
Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study
Bereaved Parents; Family-Centred Care; Paediatric; Palliative Care; Patient-Centred Care
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. MATERIALS AND METHODS: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. RESULTS: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. CONCLUSION: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.
Chong L; Khalid F; Abdullah A
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_50_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_50_2021</a>
Study to Assess the Effectiveness of Simulation Technique to Overcome Misperceptions of Undergraduate Nursing Students' About Paediatric Palliative Care
Pediatric palliative care; Simulation; Perception; Nursing students
OBJECTIVES: The purpose of the current study is to suggest a powerful strategy to overcome the misperceptions of undergraduate nursing students' about paediatric palliative care (PPC), through simulation technique. MATERIALS AND METHODS: A one-group pre-test-post-test design was carried out to assess changes in undergraduate nursing students' representations about PPC before and after the exposure to a simulation experience. A total of 24 undergraduate nursing students at the Higher Institute of Health Sciences (HIHS) of Settat have taken part in this study. RESULTS: The results have shown that there was a significant difference between mean pre- and post-test scores (P = 0.00). CONCLUSION: The simulation technique can be a powerful pedagogical strategy to overcome undergraduate nursing students' misperceptions about PPC.
Hamdoune M; Gantare A
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_114_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_114_2021</a>
Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method
Communication; Pediatric palliative care; Decision-making; Systematic review; Parental concerns; Perspective
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this article is to understand the contribution of previous research on parental perspectives in pediatric palliative care through a systematic review of literature. Nine articles that met the inclusion criteria were accessed and seven key themes emerged; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective. This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: spiritual, financial, psychological, cultural and social.
Srivastava R; Srivastava S
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_37_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_37_2021</a>
The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study
Challenges; child; Coping; life-limiting condition; Need; Neurology; Paediatric palliative care
OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. MATERIALS AND METHODS: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. RESULTS: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. CONCLUSION: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
Taib F; Beng KT; Chan LC
Indian Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_3_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_3_21</a>
Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding
Children with duchenne muscular dystrophy; paediatric palliative care; parent understanding; parents
INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. METHODS: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. RESULTS: The major themes identified were "palliative care, living with DMD, Awareness about palliative care services and challenges." Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. DISCUSSION: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. CONCLUSION: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child.
Sadasivan A; Warrier MG; Polavarapu K; Preethish-Kumar V; Nair MG; Keerthipriya MS; Vengalil S; Sagar JV; Kishore T; Nalini A; Thomas PT
Indian Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.4103/ijpc.ijpc_259_20" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_259_20</a>
End-of-Life Milieu of Critically Sick Children Admitted to a Pediatric Hospital: A Comparative Study of Survivors versus Nonsurvivors
End-of-life care; financial; psychosocial needs; religious; sick children
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived. Materials and Methods: Sixty caregivers of children (30 survivors and 30 nonsurvivors), admitted in the pediatric intensive care unit and general pediatric unit, were recruited over a period of 1 year. Mixed qualitative methods were used to collect information from parents on EOL care perspectives. Results: Demographic, disease, and treatment-related characteristics were not significantly different between nonsurvivor and survivor groups. The caregivers of nonsurvivors versus survivors showed no significant differences as regards optimal care (76.67% vs. 56.67%), social support (76.6% vs. 66.67%), and frequent recitation of scriptures (30.77% vs. 45.83%). Mean medical expenditure among children receiving EOL care was Rs. 40,883 (range: Rs. 800-5 lakhs). Regression results revealed that for every 1 day of increase in hospital stay, cost of hospitalization for dying children increased by Rs. 3000 (P = 0.0001). Medical insurance was reported by only minority of the cases (5%). Several themes emerged in the focus group discussions with care providers which highlighted the importance of communication and need for emotional, social, and financial support. EOL decision was taken in only two of the nonsurviving children. Conclusions: The study offers useful insight about social, financial, and religious "end-of-life" needs among terminally sick children and thereby sensitizes the health-care providers to optimize their care at this niche period.
Das A; Bharti B; Malhi P; Singhi S
Indian Journal of Palliative Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.4103/ijpc.ijpc_60_19" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_60_19</a>
A Comparison of Symptom Management for Children with Cancer in Iran and in the Selected Countries: A Comparative Study
symptom management; children; palliative care; Cancer
Pakseresht M; Baraz S; Rassouli M; Rejeh N; Rostami S; Mojen LK
Indian Journal of Palliative Care
2018
<a href="http://doi.org/10.4103/ijpc.ijpc_33_18" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_33_18</a>
Impact of Educational Training in Improving Skills, Practice, Attitude, and Knowledge of Healthcare Workers in Pediatric Palliative Care: Children's Palliative Care Project in the Indian State of Maharashtra
survey; palliative care; pediatrics; Indian association of palliative care
Ghoshal A; Talawadekar P; Palleri A; Marston J; Muckaden M
Indian Journal of Palliative Care
2018
<a href="http://doi.org/10.4103/ijpc.ijpc_43_18" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_43_18</a>
Pediatric End-of-life Care Barriers and Facilitators: Perception of Nursing Professionals in Jordan
Health Services Accessibility -- Evaluation; Nurse Attitudes; Perception; Terminal Care
End-of-life care is a critical issue for pediatric population with terminal illness to ensure the best possible quality of care for them and their families. A survey was conducted to identify the barriers and facilitators to provide pediatric end-of-life care. Methods: A descriptive cross-sectional study was conducted at three tertiary centers providing end-of-life care in Jordan. Two hundred critical care nurses were surveyed (response rate 93%). Results: Nurses reported moderate level of experience in all areas of delivering pediatric end-of-life care. The highest scoring of barriers respectively were patients-families barriers having deal with angry family member; health-care professional barriers multiple physicians, involved with one patient, who differ in opinion about the direction care, and where plan of care should go; and organizational barriers not available support person for the family. The highest scoring of facilitators respectively were of patients families facilitators having family members accept that the patient is dying; health-care professional-facilitators having a physician agrees about the direction of care, and organizational facilitators providing family members adequate time to be alone with the pediatric after he or she has died. Conclusion: Nurses perceived that patient-family, health-care professionals, and organizational related barriers and facilitators were had the most influence in providing of pediatric end-of-life care. Findings highlighted the need for additional education and support for pediatric staff, across professions, in providing pediatric end-of-life care. A pediatric end-of-life care team should be developed to assist in improving patients' quality of care and increasing the awareness for the need for a standardized tool to evaluate the nursing competency level concerning pediatric end-of-life care.
Khraisat OM; Alakour NA; O'Neill TM
Indian Journal Of Palliative Care
2017
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<a href="http://doi.org/10.4103/0973-1075.204232" target="_blank" rel="noreferrer">10.4103/0973-1075.204232</a>