Social work practice in perinatal palliative care: an overview
Palliative Care; adult; article; female; human; male; quality of life; palliative therapy; knowledge; bereavement; social worker; health care access; care behavior; collaborative care team; social work practice; Social Work; social work; social justice
Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quality of life and promoting social justice and access to care. Social workers play a multidimensional role in providing a holistic approach to caring for the birthing person, baby, and family. Although social workers may be part of an interdisciplinary care team, their role is not defined solely by the goals of the greater team, nor has it been discussed in depth in the perinatal palliative care literature. The purpose of this paper is to describe the knowledge, values, and skills essential to the role of the social worker in a hospital-based perinatal palliative care team. A case study will be used to illustrate the relevant practices, and implications are outlined.
Santiago-Warner S
Social Work in Health Care
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/10.1080/00981389.2024.2316697" target="_blank" rel="noreferrer noopener">10.1080/00981389.2024.2316697</a>
The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
child; article; female; human; major clinical study; male; cerebral palsy; epilepsy; palliative therapy; hospitalization; respiratory distress; medical device; assisted ventilation; genetic disorder; social worker; scoring system; cross-sectional study; caregiver; pediatrician; physiotherapist; nurse; X ray; bronchopneumonia; nutritional support; dyspnea; laboratory diagnosis; pneumonia/di [Diagnosis]; radiodiagnosis; atrophy; bacterial pneumonia; bone development; breathing muscle; interstitial pneumonia; modified Borg dyspnea scale; thorax radiography; virus pneumonia
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December 15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
Harputluoglu N; Coskun M; Cubukcu D; Celik T
Journal of Pediatric Academy
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/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener">10.4274/jpea.2023.198</a>
In every detail: spiritual care in pediatric palliative care perceived by healthcare providers
child; article; controlled study; human; palliative therapy; China; interview; health care personnel; qualitative research; social worker; therapy; thematic analysis; religion; nurse; spiritual care; developing country
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals. Methods: A qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis. Results: Participants described that the essence of spiritual support was provided "in every detail" throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers' own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child. Conclusion: This study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.
Cheng L; Cai S; Zhou X; Zhai X
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2023.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.11.005</a>
A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers
child; adult; article; controlled study; human; male; palliative therapy; knowledge; health care personnel; physician; qualitative research; social worker; phenomenology; decision making; semi structured interview; nurse; shared decision making; conceptual model; family centered care; pharmaceutics
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few structured approaches of SDM in PPC. We aimed to build a model of SDM in PPC that achieves better care and outcomes for children and their family members. Methods: This study is a descriptive phenomenology study. Participants included physicians, nurses, and social workers in the PPC team. Participants were individually interviewed face-to-face or via an online meeting software. Data were collected in semi-structured interviews and analyzed using a thematic framework analysis. Results: In total, 27 healthcare providers were interviewed. The model of SDM in PPC identified three themes, including the participants, the principle and the process of SDM. Decision participants involved the children, parents, the PPC team and others. The decision principle had three sub-themes including type, standard and precondition. The decision process describes the fundamental process of SDM and provides suggestions for mobilizing patients and parents to engage in decision-making and seeking conflict resolution. Conclusions: This is the first study to develop a SDM model in PPC. This model can provide guidance to PPC teams on SDM practices. In addition, the model contributes to the existing body of knowledge by providing a conceptual model for SDM in the context of PPC.
Cai S; Cheng L; Wang R; Zhou X; Peng X
BMC 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/10.1186/s12904-023-01307-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01307-0</a>
The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training
child; article; human; neonatology; palliative therapy; advance care planning; awareness; physician; medical education; comfort; social worker; skill; tertiary care center; conversation; thematic analysis; nurse; hospice care; Advance Care Planning
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice. <br/>METHOD(S): A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology. <br/>RESULT(S): Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents. SIGNIFICANCE OF RESULTS: A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.
Doherty M; Gujral P; Frenette M; Lusney N; van Breemen C
Palliative and Supportive 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/10.1017/S1478951523000500" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000500</a>
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
child; article; female; human; male; retrospective study; Intensive Care Units; palliative therapy; pediatric intensive care unit; follow up; consultation; hospitalization; adolescent; infant; social problem; social worker; counseling; physician; Social Work; child psychiatry; abuse; Turkey (republic); child custody; child neglect; community mental health center; hospital information system
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in harmony with the physicians, and their importance for the intensive care team. Material(s) and Method(s): Sixtysix children aged between 1 month and 18 years old who were asked for social service consultation between January 2019 and December 2020 at our hospital's PICU were included in the study. The age, diagnosis, sex, marital status (married-divorced), number of days of hospitalization, number of recurrent hospitalization, reason and result of consultation, necessity of psychiatric consultation and frequency of follow-up were retrospectively examined and recorded through the hospital information system. The collected data were analyzed by means of SPSS (version 22.0, SPSS Inc. Chicago, IL, USA). Result(s): The median age (months) (min-max) was found to be 172, 50 (6-209), and the median (min-max) duration of hospitalization (days) was found to be 2 (1-76). Family neglect was found to be the most common cause of social work indications (77.3%; n: 51). The number of patients who were given social counseling and referred to a psychiatrist was 25 (37.9%). Family neglect and abuse were detected in 5 (7.6%) patients. Apart from these, it was observed that problems such as drug supply, financial support, ID application, home device supply assistance, care center approvals and child custody were solved in each 1 (1.5%) patient. Conclusion(s): The inclusion of social workers in the children's intensive care unit teams can also prevent many social problems that can be neglected otherwise. Physicians are more focused on patient treatment, so we believe that it will be beneficial to question the family and social status of patients together with a social service unit and specialists integrated into children's intensive care units.Copyright © 2022 Ankara Pediatric Hematology Oncology Training and Research Hospital. All rights reserved.
Atakul G; Aslan K; Demircan TO; Ozhan P; Caglar A
Turkish Journal of Pediatric Disease
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/10.12956/tchd.933708" target="_blank" rel="noreferrer noopener">10.12956/tchd.933708</a>
From Pediatric to Adult Palliative Care Service: The Continuity of Care
Child; Adolescent; Adult; Young adult; Conference abstract; Psychologist; Social worker
Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.
Ronchi L; Paone G; Mazzoni E; Donati CM; Mengoli F; Amarri S; Valenti D
Palliative Medicine
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/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Pediatric Blood and Cancer
2020
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<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device
78415-72-2 (milrinone); body weight; child; clergy; conference abstract; controlled study; dietitian; emergency ward; feeding; follow up; heart failure; heart graft; home visit; hospice; hospital admission; hospital discharge; hospital readmission; human; inotropism; milrinone; money; mortality; outpatient; palliative therapy; satisfaction; social worker; travel
Purpose: Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods of time rather than at home where there is improved quality of life and less exposure to hospital acquired infections. In our state pt < than 21 years of age are able to receive concurrent care home hospice (HH) and still remain listed for HTX. We hypothesize that the continued utilization of HH will decrease the frequency of clinic visits, emergency department (ED) use and hospital admissions.
Burnette A L; Henderson H T; Adams V L; Savage A J
Journal of Heart and Lung Transplantation
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/10.1016/j.healun.2020.01.072" target="_blank" rel="noreferrer noopener">10.1016/j.healun.2020.01.072</a>
Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
burnout; child; clergy; conference abstract; controlled study; female; health care delivery; health care system; hospital patient; human; major clinical study; male; palliative therapy; physician; practice guideline; registered nurse; social worker
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three opportunities to the standardization of pediatric palliative care practice. Original Research Background: Over the past ten years, health care systems have begun to recognize pediatric palliative care (PPC) programs as the standard of practice in providing high-quality care. Despite this culture shift, little is known about how PPC programs operate, the services they provide, or the staffing required to provide them sustainably. Research Objectives: To examine the key structures and processes of PPC programs.
Rogers M; Williams C; Klick J; Friebert S; Heitner R
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.299" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.299</a>
Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Pediatrics
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).
Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study
adult; article; awareness; child; childhood cancer; clinical article; controlled study; education; female; human; male; nurse; oncologist; outpatient care; palliative therapy; personnel shortage; politics; qualitative research; reimbursement; social worker; Switzerland; thematic analysis
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology.
Rost M; De Clercq E; Rakic M; Wangmo T; Elger B
Journal of Pediatric Oncology Nursing
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/10.1177/1043454219871082" target="_blank" rel="noreferrer noopener">10.1177/1043454219871082</a>
Improving pediatric palliative care in a community-based setting through an ongoing education series
administrative personnel; checklist; child; clergy; comfort; community hospital; conference abstract; conversation; do not resuscitate order; dying; education; female; hospice care; human; Likert scale; major clinical study; male; needs assessment; nurse; palliative therapy; pharmacist; simulation; social worker; Texas
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hospital staff have varying experience in PPC and are unfamiliar with available resources. Absence of focused training on PPC and relative paucity of exposure to PPC necessitates an urgent need for improvement. Objective(s): 1. To understand baseline comfort of TCH-TW staff members in delivering PPC in a community-based setting and identify areas of improvement and knowledge gaps. 2. To pilot a campus wide ongoing education series that improves overall comfort and knowledge of TCH-TW staff members in delivering PPC in a community-based setting. Design/Method: An electronic survey (using a 5 point Likert scale) was sent to 350 staff members including physicians, mild-level providers, nurses, social workers, child life specialists, chaplains, pharmacists, and administrators to conduct a needs assessment. Results were analyzed to design a quarterly education series, utilizing didactic presentations, simulations, and small group discussions. Feedback tools included pre- and post-assessment questions, audience response system, and competency checklists. Result(s): One-hundred forty three participants (40%) completed the survey. Staff members reported an average score ~3.16 when asked if they felt the campus was 'palliative care friendly.' They reported a comfort level ~2.90 with regards to having end-of-life discussions with patients and their families, and a rating ~2.33 when it came to placing 'do-not-resuscitate' orders. An average comfort level ~3.28 was reported when caring for an actively dying patient and acute symptom management. Additional areas of improvement included understanding essential differences between palliative, concurrent, and hospice care (average score~3.39), as well as logistics and information accessibility to identify PPC resources within the campus (average score ~2.85 and ~2.93, respectively). The inaugural lecture- 'Hospice 101: Providing Palliative Care in the Community Hospital Setting: An Interprofessional Approach-' was launched in October 2018, with 37 participants reporting an overall activity quality score ~4.53. Additional lectures planned over the academic year include: having difficult conversations; logistics of when a patient dies at TCH-TW; and management of an actively dying patient. Conclusion(s): Community hospitals have a unique opportunity to provide PPC services due their closer proximity to a patient's own home. Through an ongoing campus wide educational series initiative, we aim to provide a high-quality palliative care experience that better serves our patient population.
Moonat H; Nguyen L
Pediatric Blood and Cancer
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective
article; child; childhood cancer; comfort; death; human; interview; nurse; oncologist; palliative therapy; pediatrics; psychologist; social worker; stigma; Switzerland
Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care.
De Clercq E;Rost M; Rakic M; Ansari M; Brazzola P; Wangmo T; Elger B S
BMC 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/10.1186/s12904-019-0438-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-019-0438-1</a>
Multidiciplinary approach of transition into home care for peadiatric and AYA end-of life cancer patients: A single center experience
adolescent; adult; cancer center; cancer patient; cancer staging; child; clinical article; conference abstract; controlled study; female; home care; human; male; retrospective study; social worker; time of death; young adult
Background: Transitioning care for pediatric, adolescent,and young adult (AYA) patients with end-stage cancer tohome hospice care has been challenging in Japan due to the lack of local home-care clinics for daily care and local hospitals for urgent care. Here, we report our approach for a smoothhome care transition.
Arakawa A; Ogawa C; Ishiki H; Shimizu M; Shirakawa N; Sonoda T; Ishimaru S; Nakajima M; Kumamoto T; Satomi E
Pediatric Blood and Cancer
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/10.1002/pbc.27514" target="_blank" rel="noreferrer noopener">10.1002/pbc.27514</a>
Addressing Psychosocial Support in Children with Cancer in Low- and Middle-Income Countries
cancer mortality; cancer palliative therapy; childhood cancer/dm [Disease Management]; health care personnel; health practitioner; human; low income country; middle income country; note; patient care; patient counseling; psychologist; psychosocial care; quality of life; social worker; tertiary health care
Totadri S; Bansal D
Indian Journal of Pediatrics
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/10.1007/s12098-018-2774-1" target="_blank" rel="noreferrer noopener">10.1007/s12098-018-2774-1</a>
Development and integration of a perinatal palliative care program at a tertiary care center
hospice; newborn; anencephalus; intensive care; clergy; nurse; social worker; comfort; practice guideline; neonatologist; tertiary care center; conference abstract; human; child; female; controlled study; perinatal care; palliative therapy; abortion; electronic medical record; fetus malformation; Oklahoma; prenatal diagnosis
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law stating 'it is the duty of the physician to inform the woman who carries a fetus with anomalies that perinatal hospice services are available and that this is an alternative to abortion'. We aim to describe the process of developing a perinatal palliative care (PPC) program for newborns with prenatal diagnoses of life-limiting conditions. Methods used Focus groups were conducted with responsible parties. Existing resources were identified. Implementation approaches were discussed. Summary of results The need for a PPC team was identified. Nurses, neonatologists, chaplains, social workers and child life specialists were integrated into this service with the support of an existing pediatric palliative care team. A new PPC program was introduced. Prenatal consults initiated by maternal-fetal medicine are an integral part of the prenatal care. Options of intensive care versus comfort care are offered. A neonatologist attends all these deliveries. The newborn stays with the mother. Special nurses were assigned for comfort care in the mother's room. Guidelines and specific PPC orders are now available in the electronic medical record. Examples are listed in the table 1. A website was created to inform referring physicians about this new program. Conclusions PPC was successfully established at a regional tertiary center. Parents of newborns diagnosed with lethal conditions have the choice of often non-beneficial intensive care or care focused on comfort after birth. This specialized care allows parents to celebrate the limited life of their precious newborns. Providers across the state have now access to a referral center offering perinatal neonatal palliative care. (Table Presented).
Shah B A; May R; White L; Wlodaver A
Journal of Investigative Medicine
2019
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">10.1136/jim-2018-000974.461</a>
An interdisciplinary care model to establishing palliative care for children and adolescents with cancer
Taiwan; hospice; adolescent; pain; terminal care; oncology ward; education; palliative therapy; dyspnea; social worker; cancer patient; satisfaction; childhood cancer; case study; constipation; fatigue; health care quality; conference abstract; human; child; cancer model; counseling
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an interdisciplinary team. The purpose of this study was to develop an interdisciplinary care model to establishing palliative care into end of life care for children and adolescents with cancer. Design/Methods: The setting of this study was about a 24-bed Pediatric Oncology ward in Taiwan from November 2015 to July 2017. We use "satisfaction with care at the end of life" to measure medical members satisfaction and the instruments was based on literature review. We worked out those methods:(1) Symptom management: scheduled education for symptom control and care of the end of life of patient, such as fatigue, pain, constipation, or dyspnea.(2.) To develop an interdisciplinary care model: we implemented case analysis of the end of life of patient and redesigned a new counseling mechanism. (3) To design implement for age-appropriate: child life specialists are required to set and collected age-appropriate toy from social worker. Results: After our study, It have three aspects for satisfaction score: (1)"recognition of the problem by the medical team" were increased from 5.3 points to 8.1 points; (2)" an interdisciplinary care" were increased from 6.3 points to 9.1 points; (3)" age-appropriate implement " were increased from 5.8 points to 9.7 points. Additional benefits for the rate of hospice-palliative coverage, at the end of life in children and adolescents with cancer, were increased from 68% (2013/1/1~2014/12/31) to 100% (2016/1/1~2017/12/31). Conclusions: We found that children and adolescents who died of cancer experienced substantial suffering in the last month of life. Based on our results, we established an interdisciplinary care model that it is most effectively and healthcare quality of palliative care can be improved.
Lin FR; Hsu PY
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Social worker and chaplain activities with parents of critically ill children with cancer
pediatric intensive care unit; content analysis; mortality; cancer patient; clergy; critically ill patient; social worker; human; child; female; male; interview; clinical article; palliative therapy; statistics; self care; audio recording; cancer stem cell; human cell
Learning Objectives: Social workers (SWs) and chaplains (Cs) support families of PICU cancer patients. Few data describe the activities and impact of SWs and Cs (SWs/Cs) in the PICU. This study examined the activities of SWs/Cs caring for PICU cancer or stem cell transplant (hereafter 'cancer') patients, and parents' report about their experiences with SWs/Cs. Methods: Parents of complicated PICU cancer patients (expected PICU stay > 72hours, palliative care involvement, a previous PICU admission, or a pediatric index of mortality score >=4) completed a survey at PICU admission and discharge. SWs/Cs caring for these families were invited to participate by audio recording information about their family encounters (who was present, the kinds of supports provided, and the discussion topics) and/or completing an audio recorded interview after the patient's PICU discharge. Descriptive statistics were used to analyze survey data. Recordings were analyzed using content analysis. Results: 24 parents of 18 patients provided complete survey data. Of the 67% (16/24) of parents who indicated they had met with a SW, 94% (15/16) described the SW as helpful and 81% (13/15) would ask to speak with a SW again. Of the 75% (18/24) of parents who indicated they had met with a C, 72% (13/18) described the C as helpful and 94% (17/18) would ask to speak with a C again. 3 SWs of 7 patients and 2 chaplains of 13 patients were interviewed. 3 SWs and 3 Cs submitted recordings about 34 encounters with families of 9 patients. Categories of activities included: assessing parent needs and wishes; providing emotional support; providing faith-based support; providing logistical support (e.g. obtaining meal tickets or parking passes); supporting parent self-care; and supporting parent communication with the healthcare team. Conclusions: Most parents reported positive experiences with SWs/Cs. Not all parents met with a SW or C during their child's PICU admission. SWs/Cs provided emotional, spiritual, practical, and communication support in the PICU. Future work will identify barriers and facilitators to efforts by SWs/Cs caring for PICU cancer patients and examine the impact of SW/C care on parent and patient outcomes.
Lentini N; Martinez E; Arenson M; Heap N; Michelson K
Critical Care Medicine
2018
<a href="http://doi.org/%2010.1097/01.ccm.0000528879.00148.5a" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000528879.00148.5a</a>
Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study
feasibility study; major clinical study; nurse; social worker; basic needs; caregiver; human experiment; physician; pediatrics; human; article; child; female; male; diagnosis; self care; consensus; theoretical study; Delphi study; family nursing
BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. PURPOSE: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention. DESIGN AND METHODS: A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness.
Smith NR; Bally JMG; Holtslander L; Peacock S; Spurr S; Hodgson-Viden H; Mpofu C; Zimmer M
Journal for specialists in pediatric nursing : JSPN
2018
<a href="http://doi.org/10.1111/jspn.12226" target="_blank" rel="noreferrer noopener">10.1111/jspn.12226</a>
Early involvement of palliative care in cystic fibrosis in inpatient setting: A quality improvement initiative
cystic fibrosis; hospital patient; palliative therapy; Total Quality Management; Child; disease exacerbation; e-mail; Human; lung; outcome assessment; pulmonologist; social worker
Background: Cystic fibrosis (CF) is a life-limiting disease with multiple comorbidities. It has been recommended that palliative care discussions for psychological adjustment and optimal symptom control should be initiated early. However, the palliative care service in this population remains underutilized. Objective: To increase utilization of palliative care services for patients admitted for CF exacerbations. Methods: A SMART aim statement was created with the goal of increasing consults by the palliative care service for patients admitted to the hospital with CF exacerbation. We measured the number of palliative care consult orders placed over a 2-week period. These charts were then reviewed for the presence of corresponding consult orders and notes. We conducted two PDSA (Plan-Do-Study-Act) cycles. The first intervention was sending informational emails to the pulmonary team covering the inpatient service. The second intervention was an educational session for pediatric pulmonologists and fellows to learn from social workers and palliative care specialists about their training and indication for consults. Social workers also helped educate the patients and their families on the additional benefit of palliative care services. Results: Baseline data over a 2-week period suggested that none of the CF inpatients had received involvement from the palliative care team during the corresponding admission. The percentage of CF patients who received palliative care consults increased to 33% from baseline in 5 weeks at the end of the second intervention. Conclusion: The inter-professional quality improvement model was effective in increasing palliative care consults for CF patients admitted to pulmonary service. Educational initiatives regarding palliative care services are an effective intervention to facilitate this process. Further data are required to measure outcomes in the form of feedback from patients, families and providers.
Kotwal N; Kilaikode S; Koumbourlis A; Perez G
Pediatric Pulmonology
2017
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/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Characterizing social worker and chaplain interactions with parents of critically ill children with cancer
Cancer Epidemiology; Clergy; Critically Ill Patient; Female; Male; Social Worker; Child; Clinical Article; Content Analysis; Doctor Patient Relation; Family Study; Human; Mortality; Palliative Therapy; Pediatric Intensive Care Unit
Background: Parents of children with cancer admitted to the pediatric intensive care unit (PICU) often obtain support from social workers and/or chaplains (SWs/Cs). Yet, empirical work describing the roles and activities of SWs/Cs caring for patients in the PICU is lacking. This study examined the roles of SWs/Cs caring for critically ill children with cancer and their families. Methods: Parents of patients with cancer expected to have a PICU stay > 72 hours, ongoing involvement with palliative care, or a pediatric index of mortality score > 4 were invited to participate. These criteria were meant to identify patients with more complicated PICU admissions. The SWs/Cs caring for these families in the PICU were also invited to participate. SWs/Cs audio recorded information about their encounters with parents and patients, specifically, who was present, the kinds of supports provided, and the discussion topics. These recordings were analyzed using content analysis resulting in broad categories describing support provided to the families by SWs/Cs. Results: In total, 3 SWs and 3 Cs submitted recordings about 34 encounters with families of 9 patients. Categories of activities and supports identified from these recordings included: discussing the child's condition, assessing parent or child coping, assessing the role of faith, discussing communication between parents and the medical team or advocating for the family with the medical team, providing emotional support to patients and families, discussing concerns outside of the hospital (family, financial, work), and providing legal and/or logistical support. SWs/Cs, in general, provided very similar services to families. Conclusions: SWs and Cs caring for PICU patients with cancer and their families have overlapping roles in providing emotional, communication, and logistical support. Future work will identify barriers and facilitators to SWs and Cs providing support to critically ill children with cancer.
Lentini N; Martinez E; Michelson K
Journal Of Clinical Oncology
2017
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://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e22024" target="_blank" rel="noreferrer">e22024</a>
A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Bmc Palliative Care
2017
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).
10.1186/s12904-016-0166-8