Gaining an Empathetic Insight into Parenting: Evaluating Infant Simulator Dolls for Professional Learning
child; Infant; human; palliative therapy; social work; child parent relation; infant; qualitative research
The development of an empathetic approach when working with parents and families is fundamental to both social work and children's nursing; however, opportunities to develop this are limited. RealCare Baby infant simulator dolls were used with the aim of enabling students to gain an empathetic insight into parenting. A qualitative, evaluation study involving semistructured interviews with 10 social work and 11 children's nursing students was undertaken to evaluate experiences and views of infant simulator dolls, in relation to professional learning. Using reflexive thematic analysis of interview data, six key themes were identified: (1) positive experiences, (2) challenges, (3) impact on self, (4) empathy toward parents, (5) realism and (6) learning by reflection. All themes were evident from the participants' accounts in the context of the parenting experience. In addition to the overall positive impact on students, practical and technical challenges were also identified. However, despite these difficulties, participants valued the learning experience gained from caring for a doll and many articulated how an empathetic understanding of the parenting role was enhanced. This will potentially enable social work and children's nursing students to support parents more sensitively and empathetically.
Whiting L; Petty J; Roberts S; Littlechild B; Mills K
Health and Social Work
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/10.1093/hsw/hlad037" target="_blank" rel="noreferrer noopener">10.1093/hsw/hlad037</a>
When paediatricians and families can't agree
child; human; ethics; preschool child; terminal care; United Kingdom; medical ethics; treatment outcome; infant; conflict; treatment withdrawal; child health care; experimental therapy
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure, and I try as far as possible to help them and their families. Occasionally there is science and evidence behind the decisions we make, but not always. Medicine does have its black and white disciplines—it is either cancer or it isn’t; or you either need to have an operation or you don’t. But paediatrics is often a discipline of uncertainty dealing with many shades of grey. Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child’s best interests and use therapies that will help with life’s quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Juggling our way along the best route required in reaching the best outcome for the child makes my opening paragraphs easier said than done. First there is medical technology, what we can do, with advances developing at a breakneck speed. Home ventilation, home total parenteral nutrition, home dialysis and transplants are all now commonplace and can sustain life in children in whom death would otherwise have been inevitable. Gene editing and small molecule therapies have the potential to change the …
Wallis C
Archives of Disease in Childhood
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/10.1136/archdischild-2017-314414" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314414</a>
Psychologists as Pivotal Members of the Pediatric Palliative Care Team
child; Palliative Care; diagnosis; article; human; quality of life; palliative therapy; Psychology; adolescent; therapy; evidence based practice; drug therapy; consensus; interdisciplinary research; psychologist
Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. Objectives: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. Methods: Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. Results: As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. Conclusions: With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families.
Thompson AL; Kentor RA; Schaefer MR; McCarthy SR
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2024.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.006</a>
The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Children
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/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</a>
Empathic Care of Neonates: A Critical Literature Review
Infant Newborn; review; patient; patient-centered care; neonate; Clinical empathy; empathic concern
Clinical empathy is a multidimensional ability to feel the patient's suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others. The authors performed a critical review of the literature about empathy in neonatal care, in 2 databases, and analyzed the co-occurrence of keywords in the last 10 years. Nine articles were included in the qualitative synthesis. They highlight the interconnection between empathy, communication, ethics, and palliative care. Empathy was analyzed in situations that included pain, death, and suffering in the neonate, especially related to critically ill neonates. Strategies such as self-reflection and digital storytelling may help increase the clinical empathy education of health professionals. There are gaps in research considering the measurement of clinical empathy in neonatal care, and this measurement should be encouraged. To change care practices, education on empathy for health professionals, especially physicians, should be improved.
Sobrinho Valete CO; Albuquerque A; Luiz Ferreira EA
The Permanente Journal
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/10.7812/tpp/23.107" target="_blank" rel="noreferrer noopener">10.7812/tpp/23.107</a>
Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L
JAMA Network Open
2024
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<a href="http://doi.org/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.53264</a>
Changing the Landscape of the Neighborhood: The Expanding Role of the Pediatric Palliative Advanced Practice Registered Nurse
child; article; human; palliative therapy; pharmacology; adolescent; evidence based practice; emergency care; medical society; consensus; special situation for pharmacovigilance; neighborhood; registered nurse
There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical complexity live longer, and the demand for pediatric palliative care is growing. As programs expand to meet this need, there are new opportunities for pediatric palliative APRNs to practice outside acute care consultative models, within large children's hospitals. The aim of this article was to describe the expanding role of the pediatric palliative APRN using a progressive case study that describes how these expanding roles can collaborate using evidence-based practice and expert consensus to define their roles. If pediatric palliative APRNs hesitate to define their practice, others will define it for them.
Sartor N; Bass AK; Overstreet K
Journal of Hospice and Palliative Nursing
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/10.1097/NJH.0000000000001018" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000001018</a>
Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers
distress; medical futility; death & dying; end-of-life (EOL); ethical conflict; potentially inappropriate treatment
BACKGROUND: Potentially inappropriate treatment in critically ill adults is associated with healthcare provider distress and burnout. Knowledge regarding perceived potentially inappropriate treatment amongst pediatric healthcare providers is limited. OBJECTIVES: Determine the frequency and factors associated with potentially inappropriate treatment in critically ill children as perceived by providers, and describe the factors that providers report contribute to the distress they experience when providing treatment perceived as potentially inappropriate. METHODS: Prospective observational mixed-methods study in a single tertiary level PICU conducted between March 2 and September 14, 2018. Patients 0-17 years inclusive with: (1) ≥1 organ system dysfunction (2) moderate to severe mental and physical disabilities, or (3) baseline dependence on medical technology were enrolled if they remained admitted to the PICU for ≥48 h, and were not medically fit for transfer/discharge. The frequency of perceived potentially inappropriate treatment was stratified into three groups based on degree of consensus (1, 2 or 3 providers) regarding the appropriateness of ongoing active treatment per enrolled patient. Distress was self-reported using a 100-point scale. RESULTS: Of 374 patients admitted during the study, 133 satisfied the inclusion-exclusion criteria. Eighteen patients (unanimous - 3 patients, 2 providers - 7 patients; single provider - 8 patients) were perceived as receiving potentially inappropriate treatment; unanimous consensus was associated with 100% mortality on 3-month follow up post PICU discharge. Fifty-three percent of providers experienced distress secondary to providing treatment perceived as potentially inappropriate. Qualitative thematic analysis revealed five themes regarding factors associated with provider distress: (1) suffering including a sense of causing harm, (2) conflict, (3) quality of life, (4) resource utilization, and (5) uncertainty. CONCLUSIONS: While treatment perceived as potentially inappropriate was infrequent, provider distress was commonly observed. By identifying specific factor(s) contributing to perceived potentially inappropriate treatment and any associated provider distress, organizations can design, implement and assess targeted interventions.
Sarpal A; Miller MR; Martin CM; Sibbald RW; Speechley KN
Frontiers in Pediatrics
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/10.3389/fped.2024.1272648" target="_blank" rel="noreferrer noopener">10.3389/fped.2024.1272648</a>
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>
Exploring Parent Experiences With Early Palliative Care Practices in the NICU
Palliative Care; NICU; parent experiences
BACKGROUND: The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliative care (PC) may provide support for NICU parents. Key concepts of early PC in the NICU include shared decision-making, care planning, and support for coping with distress. PURPOSE: The purpose of this study was to explore parent experiences during their child's NICU admission with the early PC practices of shared decision-making, care planning, and coping with distress. METHODS: Qualitative descriptive methodology was used. Strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Parents (N = 16) were interviewed, and data were analyzed by conventional content analysis. Targeted recruitment of fathers occurred to ensure they comprised 25% of sample. RESULTS: Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. IMPLICATIONS FOR PRACTICE AND RESEARCH: These findings highlight key areas for practice improvement: providing more support and collaboration in decision-making, true engagement of parents in care planning, and encouraging peer support and interaction in the NICU and in online communities.
Quinn M; Gephart S; Crist J
Advances in Neonatal Care
2024
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<a href="http://doi.org/10.1097/anc.0000000000001137" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001137</a>
End of life care for infants, children and young people with life-limiting conditions
child; Infant; pediatrics; Terminal Care; terminal care; article; childhood mortality; human; child health; palliative therapy; infant; college; Western Europe
Essential facts According to the Royal College of Paediatrics and Child Health, the UK has one of the worst child mortality rates in western Europe, with more than 2,000 children and young people dying in 2012. In addition, it is estimated that about 50,000 children and young people in the UK have a life-limiting condition that may need palliative care.
Pearce L
Nursing standard
2017
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<a href="http://doi.org/10.7748/ns.31.23.15.s16" target="_blank" rel="noreferrer noopener">10.7748/ns.31.23.15.s16</a>
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>
The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Nogueira AJ; Ribeiro MT
Clinics and Practice
2024
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<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
Psychometrics assessment of ethical decision-making around end-of-life care scale for adolescents in the final stage of life
child; Adolescent; Terminal Care; terminal care; article; female; human; male; validity; Psychometrics; reliability; Iran; human experiment; health care personnel; adolescent; case control study; decision making; nurse manager; psychometry; ethical decision making; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency; exploratory factor analysis
Introduction: Healthcare professionals have a critical role in ethical decision-making around end-of-life care. Properly evaluating the ethical decision-making of health care professionals in end-of-life care requires reliable, tailored, and comprehensive assessments. The current study aimed to translate and assess psychometrically a Persian version of the ethical decision making in end-of-life care scale for Iranian adolescents in the final stages of life. Methods: The present study investigates the methodology and multicenter research. 310 healthcare professionals who treat/care for adolescents at the end of life were selected from 7 cities in Iran. The original version of the end-of-life care decision-making scale was translated into Persian using the forward-backward translation method, and its psychometric properties were evaluated using COSMIN criteria. Results: Exploratory factor analysis revealed that the factor loadings of the items ranged from 0.68 to 0.89, all of which were statistically significant. Furthermore, three factors had eigenvalues greater than 1, accounting for 81.64% of the total variance. Confirmatory factor analysis indicated a proper goodness of fit in the hypothesized factor structure. The internal consistency reliability of the tool was assessed in terms of its homogeneity, yielding a Cronbach's alpha coefficient of 0.93. Conclusion: The Persian version of the End-of-Life Care Decision-Making Scale demonstrates satisfactory validity and reliability among healthcare professionals working with adolescents in the final stages of life. Therefore, nursing managers can utilize this tool to measure and evaluate ethical decision-making in end-of-life care for adolescents in the final stages of life and identify the most appropriate strategies, including educational interventions, to improve ethical decision-making in end-of-life care if necessary.
Mohammadi F; Masoumi SZ; Khazaei S; Hosseiny SMM
Frontiers in Pediatrics
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/10.3389/fped.2023.1266929" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1266929</a>
Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Miquel P; Clemente I; Ciccorossi M
BMC Palliative 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/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</a>
Consumer and provider perceptions of the specialist unit model of care: A qualitative study
Humans; Child; Qualitative Research; Palliative Care; Australia
Background: Specialist care units cater to targeted cohorts of patients, applying evidence-based practice to people with a specific condition (e.g., dementia) or meeting other specific criteria (e.g., children). This paper aimed to collate perceptions of local consumers and health providers around specialist care units, as a model of care that may be considered for a new local healthcare facility. Methods: This was a qualitative study using two-hour workshops and interviews to collect data. Participants were consumers and health providers in the planned facility's catchment: 49 suburbs in metropolitan Australia. Consumers and health providers were recruited through advertisements and emails. An initial survey collected demographic details. Consumers and health providers participated in separate two-hour workshops in which a scenario around the specialist unit model was presented and discussion on benefits, barriers and enablers of the model was led by researchers. Detailed notes were taken for analysis. Results: Five consumer workshops (n = 22 participants) and five health provider workshops (n = 42) were conducted. Participants were representative of this culturally diverse region. Factors identified by participants as relevant to the specialist unit model of care included: accessibility; a perceived narrow scope of practice; coordination with other services; resources and infrastructure; and awareness and expectations of the units. Some factors identified as risks or barriers when absent were identified as strengths and enablers when present by both groups of participants. Conclusions: Positive views of the model centred on the higher perceived quality of care received in the units. Negative views centred on a perceived narrow scope of care and lack of flexibility. Consumers hinted, and providers stated explicitly, that the model needed to be complemented by an integrated model of care model to enable continuity of care and easy transfer of patients into and out of the specialist unit.
Long JC; Carrigan A; Roberts N; Clay-Williams R; Hibbert PD; Zurynski Y; Maka K; Loy G; Braithwaite J
PLoS One
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/10.1371/journal.pone.0293025" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0293025</a>
Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Acta Paediatrica
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/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</a>
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset
Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.
Kubek LA; Claus B; Zernikow B; Wager J
BMC Palliative 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/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</a>
Collaboration: How does it work according to therapists and parents of young children? A systematic review
Child; human; palliative therapy; preschool child; awareness; Only Child; child parent relation; paramedical personnel; disabled child
Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. Methods: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two-way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line-by-line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. Results: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. Conclusions: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist-led and child-centred towards family-centred care.
Klatte IS; Ketelaar M; de Groot A; Bloemen M; Gerrits E
Child: Care, Health and Development
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/10.1111/cch.13167" target="_blank" rel="noreferrer noopener">10.1111/cch.13167</a>
"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
Humans; Parents; Child; child; Male; Attention; Emotions; sibling; life-threatening condition; Adaptation Psychological; life-limiting condition; paediatric palliative care; lived experience; Siblings; Hermeneutics
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
Kittelsen TB; Castor C; Lee A; Kvarme LG; Winger A
International Journal of Qualitative Studies on Health and Well-being
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/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener">10.1080/17482631.2024.2321645</a>
Survival, short-term morbidity of extremely low gestational age infants and their predictors
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Kis H; Lemyre B; Radonjic A; Feberova J
Paediatrics and Child Health
2019
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<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
How to move forward in shared decision-making in pediatric palliative care
child; Palliative Care; Decision Making; article; human; palliative therapy; clinical article; adolescent; therapy; infant; shared decision making; special situation for pharmacovigilance
Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.
Joren CY; Aris-Meijer JL; Verhagen AAE; Lantos J
Current Problems in Pediatric and Adolescent 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/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2024.101569</a>
Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Journal of Pediatrics
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/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; automatic positive airway pressure; beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]; beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Acta Paediatrica
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/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses
child; adult; female; human; male; Hospices; young adult; hospice; nurse; questionnaire; hospice care; pediatric nursing; pediatric nurse
BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. <br/>METHOD(S): Data was collected between 22 October 2022 and 25 February 2023. An online survey method was used to collect sociodemographic data and paediatric hospice data for paediatric nurses and a scale was used to determine the opinions of nurses working in the field of paediatrics. A total of 300 paediatric nurses who voluntarily participated in the collection of the research data were selected with the convenience sampling method, with written consent. SPSS 26.0 data analysis programme was used in the statistical analysis of the data obtained in the study, and Independent Sample t-test and ANOVA analysis were used in the analysis of the data. FINDINGS: Of the participating paediatric nurses, 60.9% were women, 39.1% were men, 41.1% were married, 65.9% were between the ages of 22-33, and 71.6% worked at a paediatric hospice. There was no significant difference in paediatric hospice scale scores according to sociodemographic variables such as gender, age, marital status, education level and the health institution worked by paediatric nurses (p>.05). There was a significant difference in paediatric hospice scale scores according to hospice information. It was determined that the establishment of paediatric hospices had an effect on the quality of care (p<.01). <br/>CONCLUSION(S): Paediatric nurses felt that the establishment of paediatric hospices would improve the quality of care of children at the end of life. It is recommended that applications and studies on the establishment and structuring of paediatric hospices should be carried out by expanding the samples, not only in the field of paediatric nursing, but also in all nursing fields.
Hayli CM; Kosem DD; Bor NA
International Journal of Palliative Nursing
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/10.12968/ijpn.2024.30.1.20" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2024.30.1.20</a>
A "good" death in a pediatric ICU: Is it possible?
human; family; palliative therapy; medical decision making; Medline; review; newborn intensive care; information retrieval; brain death; clinical pathway
Objectives: In the modern pediatric intensive care unit (PICU) physicians are often faced with the need to interrupt life-sustaining treatment (LST) and to allow children to die when no further treatment options are available. Consequently, the importance of palliative care has been increasing in this context. The goal of this review is to provide intensivists with guidelines to allow PICU patients to have a more dignified and humane death. Source of data: Medline was searched using relevant keywords, emphasizing the topic of death in the PICU. The principles of palliative care medicine were then applied to this context. Summary of data: To ensure a dignified death for a child receiving palliative care in the PICU some important measures must be taken, such as: let the family participate in the decision-making process in an open and honest manner; allow family members to perform their religious rites and rituals; offer them moments of complete privacy; effectively manage pain and discomfort, especially at the time of removal of LST; and finally, let the family be present when LST is interrupted, if they so desire. Conclusion(s): A child's death following withdrawal of LST in the PICU can be humane and dignified if basic principles of palliative care are followed. This is especially important in an environment that is notorious for the use of complex technology and described by the general public as inhumane.
Garros D
Jornal de Pediatria
2003
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<a href="http://doi.org/10.2223/jped.1101" target="_blank" rel="noreferrer noopener">10.2223/jped.1101</a>
Grieving Children' Death in an Intensive Care Unit: Implementation of a Standardized Process
Humans; Child; Grief; Intensive Care Units; Health Personnel; Only Child; Terminal Care; Bereavement; Burnout Professional
Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive implementation of a structured, peer-to-peer bereavement support program for intensive care unit (ICU) staff at a tertiary children's hospital. Results: Thirty-five virtual sessions were held over the period of one year.Through these sessions, participants shared perspectives and normalized reactions, and explored potential coping strategies. Post-session feedback surveys demonstrated the negative impact of a death on the personal or work life of ICU staff. Additionally, nearly all reported some level of burnout. Conclusions: The sessions were feasible and positively impacted staff coping and well-being. Barriers and facilitators to session attendance, as well as suggestions for improvement, were also explored. Implications for practice and future research are discussed. No clinical trial registration is applicable.
Delgado-Corcoran C; Wawrzynski SE; Mansfield K; Fuchs E; Yeates C; Flaherty BF; Harousseau M; Cook L; Epps JV
Journal of Palliative 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/10.1089/jpm.2023.0134" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0134</a>
Monitoring of physiologic features and treatment aspects of children on home invasive mechanical ventilation
Respiration Artificial; Monitoring Physiologic; Ventilators Mechanical; monitoring; pediatric long-term ventilation; tracheostomy ventilation
Pediatric home invasive mechanical ventilation patients are a small but resource-intensive cohort, requiring close monitoring and multidisciplinary care. Patients are often dependent on their ventilator for life support, with any significant complications such as equipment failure, tracheostomy blockage, or accidental decannulation becoming potentially life-threatening if not identified quickly. This review discusses the indications and variations in practice worldwide, in terms of models of care, including home care provision, choice of equipment, and monitoring. With advances in technology, optimal monitoring strategies for home, continue to be debated: In-built ventilator alarms are often inadequately sensitive for pediatric patients, necessitating additional external monitoring devices to minimize risk. Pulse oximetry has been the preferred monitoring modality at home, though in some special circumstances such as congenital central hypoventilation syndrome, home carbon dioxide monitoring may be important to consider. Children should be under regular follow-up at specialist respiratory centers where clinical evaluation, nocturnal oximetry, and capnography monitoring and/or poly(somno)graphy and analysis of ventilator download data can be performed regularly to monitor progress. Recent exciting advances in technology, particularly in telemonitoring, which have potential to hugely benefit this complex group of patients are also discussed.
Chawla J; Tan HL
Pediatric Pulmonology
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/10.1002/ppul.26901" target="_blank" rel="noreferrer noopener">10.1002/ppul.26901</a>
How Do Children With Medical Complexity Die? A Scoping Review
Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
Chan Ng GM; Bourassa MH; Patel H
Journal of Palliative Medicine
2024
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<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</a>
The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
2024
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<a href="http://doi.org/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
child; Adolescent; Terminal Care; terminal care; adult; article; human; male; palliative therapy; aged; Europe; Australia; grief; interview; education; dying; adolescent; questionnaire; curriculum; awareness; literacy
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.
Bollig G; Graf K; Gruna H; Drexler D; Pothmann R
Children
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/10.3390/children11020224" target="_blank" rel="noreferrer noopener">10.3390/children11020224</a>
PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
child; adult; article; female; human; major clinical study; male; palliative therapy; hospitalization; follow up; adolescent; therapy; caregiver support; correlation coefficient; psychometry; Cronbach alpha coefficient; internal consistency; person centered care; convergent validity; exploratory factor analysis; root mean squared error; test retest reliability
Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories. Study design and setting: Parents self-administered baseline and two-week follow-up surveys online. Exploratory Factor Analysis (EFA) was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients (ICCs), and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care (MPOC-20) and Quality of Children's Palliative Care Instrument (QCPCI). Results: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. EFA grouped PRECIOUS into 5 scales: Collaborative and goal-concordant care (12 items), Caregiver support and respectful care (15 items), Access to financial and medical resources (5 items), Reducing caregiving stressors (9 items), and Hospitalization-specific processes (4 items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. ICCs ranged from 0.72 to 0.86. Significant correlations with MPOC-20 and QCPCI confirmed convergent validity. The original 56-item tool was reduced to 45-items. Conclusion: PRECIOUS demonstrates satisfactory measurement properties for assessing QoC for seriously ill children.
Ang FJL; Bun Cheung Y; Gandhi M; Ostbye T; Malhotra C; Malhotra R; Cristelle Chow CT; Heng Chong P; Amin Z; Teresa Tan SZ; Tewani K; Hanim Buang SN; Finkelstein EA
Journal of Clinical Epidemiology
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/10.1016/j.jclinepi.2024.111286" target="_blank" rel="noreferrer noopener">10.1016/j.jclinepi.2024.111286</a>
Musculoskeletal Injections for Palliative Treatment of Neuromuscular Hip Dysplasia patients: How I Do It
child; Palliative Care; cerebral palsy; diagnosis; article; human; male; quality of life; palliative therapy; school child; surgery; adolescent; drug therapy; drug administration; hip dysplasia; steroid; hip joint; oral drug administration
This review describes our institution's standardized technique as well as potential pitfalls for therapeutic steroid injections in children with symptomatic neuromuscular hip dysplasia. Symptomatic, painful neuromuscular hip dysplasia can dramatically affect quality of life. Steroid injections are used to identify the source of perceived pain, temporarily treat pain while awaiting surgical intervention, or for therapeutic management for nonoperative hip joints.
Amaral JZ; Schultz RJ; Rosenfeld SB; Kan JH
Pediatric Radiology
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/10.1007/s00247-024-05858-z" target="_blank" rel="noreferrer noopener">10.1007/s00247-024-05858-z</a>
Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study
burnout; care behavior; health care personnel; palliative therapy; psychologist; Reiki; alternative medicine; article; child; child psychology; clinical practice; clinical psychology; controlled study; diastolic blood pressure; emotional stress; heart rate; human; Italy; nurse; oxygen saturation; Palliative Care; Pilot Projects; pilot study; self care; special situation for pharmacovigilance; systolic blood pressure; work environment; workplace
OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. <br/>METHOD(S): Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. <br/>RESULT(S): Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.
Zucchetti G; Ciappina S; Bottigelli C; Campione G; Parrinello A; Piu P; Lijoi S; Quarello P; Fagioli F
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/S1478951523001852" target="_blank" rel="noreferrer noopener">10.1017/S1478951523001852</a>
Evaluation of paediatric palliative care ambulance plans: A retrospective study
ambulance; palliative therapy; article; Australia; child; data completeness; drug therapy; drug use; human; male; New South Wales; Palliative Care; paramedical personnel; Retrospective Studies; retrospective study; scope of practice; special situation for pharmacovigilance; terminal care
Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.
Wan J; Vaughan A; Shepherd E; Coombs S; Trethewie S; Jaaniste T
Journal of Child 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/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener">10.1177/13674935231225714</a>
Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia
Australia; care behavior; decision making; interpersonal communication; parent; pediatrician; phenomenology; article; child; courage; human; interview; male; palliative therapy; shared decision making; signal transduction; simulation
Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. Design: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. Setting: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. Participants: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. Results: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. Conclusions: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.
Vemuri S; Hynson J; Williams K; O'Neill J; Gillam L
BMJ Open
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/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2023-075740</a>
Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care
neonatal intensive care unit; newborn intensive care; nurse; nursing education; palliative therapy; qualitative research; adult; article; Canadian; clinical article; curriculum; female; human; immersion; Infant Newborn; interview; male; meaning-making; neonatal nurse; newborn; Palliative Care; thematic analysis; therapy
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. Participants: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. Methods: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. Results: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. Conclusion: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.
St Louis J; Raffin-Bouchal S; Benzies K; Sinclair S
Journal of Obstetric, Gynecologic, and Neonatal Nursing
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.jogn.2023.12.005" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2023.12.005</a>
Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization
Hospices; Palliative Care
Objective This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare utilization. Study design Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) home visit through two HBHPC programs in the Midwest from 1/1/2013 through 12/31/2018. Descriptive statistics were calculated for healthcare utilization variables. Paired t-test or Wilcoxon signed-rank test compared the changes in healthcare utilization the year prior to and year after initial provider home visits. Results The cohort included 195 individuals (49% female), with diagnoses comprised of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed reductions in median [IQR] number of ICU days (before HV 12 [4, 37] after HV 0 [0, 8], p<0.001); inpatient admissions (before HV 1 [1, 3] after HV 1 [0, 2], p=0.005); and number of inpatient days (before HV 5 [1, 19] after HV 2 [0, 8], p=0.009). There was an increase in clinically relevant phone calls (CRPC) to the HBHPC team (before HV 1 [0, 4] vs after HV 4 [1, 7], p<0.001) and calls to the HBHPC team before emergency department visits (before HV 0 [0, 0] vs after HV 1 [1, 2], p<0.001). Conclusion HBHPC provider home visits were associated with decreased inpatient admissions, hospital days, and ICU days, and increased CRPC and phone calls prior to emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient utilization and increased utilization of the HBHPC team.
Smith SM; Grossoehme DH; Cicozi K; Hiltunen A; Roth C; Richner G; Kim SS; Tram NK; Friebert S
Journal of Pediatrics
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/10.1016/j.jpeds.2024.113929" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113929</a>
The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review
palliative therapy; physician; child; health care delivery; health care personnel; human; organization; Palliative Care
Background: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care. Aim: The aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care. Methods: We used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel's needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis. Results: Overall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care. Conclusion: The findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.
Schroder J; Riiser K; Holmen H
BMC Health Services Research
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/10.1186/s12913-023-10495-7" target="_blank" rel="noreferrer noopener">10.1186/s12913-023-10495-7</a>
Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis
decision making; medical ethics; neonatal intensive care unit; newborn intensive care; palliative therapy; parent; qualitative research; ambivalence; article; clinical article; father; female; human; Infant Newborn; Intensive Care Units; interview; life sustaining treatment; male; meaning-making; shared decision making
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
SaintDenny K; Lamore K; Nandrino JL; Rethore S; Prieur C; Mur S; Storme L
Acta Paediatrica
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/10.1111/apa.17109" target="_blank" rel="noreferrer noopener">10.1111/apa.17109</a>