Flourishing, religion, and burnout among caregivers working in pediatric palliative care
child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Oberholzer AE; Doolittle BR
International Journal of Psychiatry in Medicine
2024
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/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</a>
Thirty-day mortality as a metric for palliative radiotherapy in pediatric patients
mortality; palliative therapy; pediatric patient; adult; article; biological marker; child; female; human; male; Metronidazole; patient care; patient referral; quality of life; radiotherapy; Radiotherapy; terminally ill patient
Purpose of review: Thirty-day mortality (30DM) is an emerging consideration for determining whether terminally ill adult patients may benefit from palliative radiotherapy (RT). However, the efficacy and ethics of delivering palliative RT at the end of life (EOL) in children are seldom discussed and not well-established. Recent findings: Palliative RT is perhaps underutilized among patients ≤21 years old with rates as low as 11%. While effective when delivered early, clinical benefit decreases when administered within the last 30 days of life. Pediatric 30DM rates vary widely between institutions (0.7-30%), highlighting the need for standardized practices. Accurate prognosis estimation remains challenging and prognostic models specific to palliative pediatric patients are limited. Discordance between provider and patient/parent perceptions of prognosis further complicates decision-making. Summary: RT offers effective symptom control in pediatric patients when administered early. However, delivering RT within the last 30 days of life may provide limited clinical benefit and hinder optimal EOL planning and care. Early referral for palliative RT, preferably with fewer fractions (five or fewer), along with multidisciplinary supportive care, optimizes the likelihood of maintaining patients' quality of life. Prognosis estimation remains difficult, and improving patient and family understanding is crucial. Further research is needed to refine prognostic models and enhance patient-centered care.
Keit E; Nanda R; Johnstone PAS
Current Opinion in Supportive and Palliative Care
2023
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/10.1097/SPC.0000000000000686" target="_blank" rel="noreferrer noopener">10.1097/SPC.0000000000000686</a>
Hospice Care in India-A Pediatrician's Perspective
child; Hospice Care; article; human; palliative therapy; Hospices; India; pediatrician; pediatric patient; malignant neoplasm; hospice care; terminally ill patient; India
Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of pediatric patients in India remain limited. This article aims to explore the pediatrician's perspective on hospice care in India, highlighting the challenges and opportunities for enhancing end-of-life care for children. By understanding the unique needs of pediatric patients and their families, healthcare professionals can contribute to the development and improvement in hospice care services across the country. Copyright © 2023. MedIntel Services Pvt Ltd. All rights reserved.
Nair M; Ghoshal A
South Asian Journal of Cancer
2023
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/10.1055/s-0043-1771407" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1771407</a>
Religious and cultural challenges in paediatrics palliative care: A review of literature
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Journal of Pediatric Hematology/Oncology
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/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</a>
Palliative care in an underserved community: Striving and thriving
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Pediatrics
2018
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).
Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
article; bereavement support; child; China; comfort; controlled study; death education; hematology; human; palliative therapy; pediatrics; qualitative research; religion; spiritual care; support group; terminally ill patient
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.
Cai S; Guo Q; Luo Y; Zhou Y; Abbas A; Zhou X; Peng X
Palliative Medicine
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/10.1177/0269216319896747" target="_blank" rel="noreferrer noopener">10.1177/0269216319896747</a>
The needs of parents during end-of-life care for terminally ill child
terminal care; human; child; female; male; clinical article; death; palliative therapy; conference abstract; human tissue; identity; interview; data analysis; mother; risk factor; leukemia; terminally ill patient; solid malignant neoplasm; genetic transcription; grounded theory; qualitative research; genetic disorder; father; immune deficiency
Research aim: The main aim was to describe the needs of parents caring for a terminally ill child during the course of the illness, the time of dying, and after the death of the child. Secondary aim was to identify the risk factors occurring during care provision. Study population: The study sample consisted of 9 parents of 8 children; seven mothers and two fathers. All participants lost their child due to a serious illness (solid tumour, leukaemia, genetic conditions, immunodeficiency syndrome, neurodegenerative condition). The child's age at their death varied from 2 months to 14 years. 6 children died in hospital, 2 at home. Study design: This was a qualitative study. The data collection was conducted by in-depth interviews with bereaved parents. Inclusion criteria was a death of a child due to a serious illness. Participants were recruited among bereaved parents via organisation for bereaved parents, by the snow ball method and self-selection method. Data analysis: Collected data were analysed by grounded theory techniques. All interviews were transcribed verbatim and analysed by open coding and axial coding. Results: Two categories based on key findings were identified: The preservation of one's identity of parent and the influence of the surroundings. The need to be with the child and the need to take care of the child were identified as the main needs of the bereaved parents. The influence of the surroundings is characterised by the support provided by the health professionals taking care of the child and the family. Issues identified by the parents included, among others, the issue of doctor-parent communication, the lack of psychological support, and the importance of support provided to parents after the child's death. The results of the study indicate the need for a complex approach to the family and the need of paediatric palliative care.
Polakova K; Loucka M
Palliative Medicine
2018
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Spirituality in patients with advanced illness: The role of symptom control, resilience and social network
psychological resilience; psychology; Religion; Social Support; adolescent; Adult; Aged; clinical trial; Cross-Sectional Studies; cross sectional study; emotion; Female; Human; Male; Middle Aged; multicenter study; Palliative therapy; social support; Terminal Care; terminally ill patient; very elderly; Young Adult
In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by palliative care teams. Statistically significant correlations were found between some dimensions of spirituality and poor symptomatic control, resiliency, and social support. In the structural model, three variables predicted spirituality: having physical symptoms as the main source of discomfort, resiliency, and social support. This work highlights the relevance of the relationships among spirituality and other aspects of the patient at the end of life.
Fombuena M; Galiana L; Barreto P; Oliver A; Pascual A; Soto-Rubio A
Journal Of Health Psychology
2016
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/10.1177/1359105315586213" target="_blank" rel="noreferrer">10.1177/1359105315586213</a>
The caregivers' psychosocial and economic effects of caring for terminally ill patients: The case of hospice Africa Uganda
Caregiver; female; hospice; male; terminally Ill Patient; uganda; Child; Diagnosis; Exhaustion; Human; Major Clinical Study; Malignant Neoplasm; Sampling; Statistical Significance; Wellbeing
Background: Giving care to a patient at the end of life can be a challenging and confronting experience. The responsibilities of care giving may include executing complex physical and mental tasks, financial planning, patient care decision making, emotional support, and coordination of care. Objective: To identify the psychosocial and economic effects of caring for terminally ill patients. Methods: This study was cross-sectional and both qualitative and quantitative in nature. The source of data was restricted to caregivers of terminally ill patients under the care of Hospice Africa Uganda Kampala site. Sampling was simple random. Results: A total of 60.9% of respondents had their patients diagnosed with cancer. The majority of them (62%, n = 105) had spent less than 1 year caring for their patients, followed by those who had taken between 1 and 5 years (18%, n = 31). Care taking had statistically significant effects on the psychosocial well-being of caretakers as shown by the p-values (<0.05). This was particularly for the effect on getting enough time to attend social gatherings (p < 0.05), having enough time for their children (p < 0.05), their relationship with God (p < 0.05), fatigue and exhaustion as a result of the caring role (p < 0.05). The results also show that providing care for terminally ill patients had minimal effects on the economic livelihood of the caregivers. Care giving only had statistically significant influence on the changes in income of caretakers (p < 0.005) and the fact that caretakers could not find another job alongside caring for the patient (p < 0.05). Conclusion: Care giving has a statistically significant effect on the psychosocial well-being and economic livelihood of caregivers.
Buyinza N
Palliative Medicine
2016
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/10.1177/0269216316665314" target="_blank" rel="noreferrer">10.1177/0269216316665314</a>