keyword
https://read.qxmd.com/read/38511290/between-hope-and-disillusionment-ecmo-seen-through-the-lens-of-nurses-working-in-a-neonatal-and-paediatric-intensive-care-unit
#1
JOURNAL ARTICLE
Jovana A Jucker, Vincenzo Cannizzaro, Roxanne E Kirsch, Jürg C Streuli, Eva De Clercq
BACKGROUND: Using extracorporeal membrane oxygenation (ECMO) in paediatric and neonatal intensive care units (PICU/NICU) creates ethical challenges and carries a high risk for moral distress, burn out and team conflicts. AIM: The study aimed to gain a more comprehensive understanding of the underlying factors affecting moral distress when using ECMO for infants and children by examining the attitudes of ECMO nurses. METHODS: Four focus groups discussions were conducted with 21 critical care nurses working in a Swiss University Children's Hospital...
March 21, 2024: Nursing in Critical Care
https://read.qxmd.com/read/38508024/experiences-of-nursing-students-providing-end-of-life-care-for-children-and-young-people-a-focus-group-study
#2
JOURNAL ARTICLE
Claire Camara, Leah Rosengarten, Jane Callum
BACKGROUND: End of life care for Children and Young People (CYP) is known to be an emotive area of practice. Previous studies involving qualified nurses have demonstrated that nurses feel they need more end-of-life care education, as well as a platform for sharing experiences and discussing them with others. Evidence relating to nursing students remains limited despite being widely acknowledged as a difficult aspect of nursing education. AIMS: This study aims to help improve understanding of the lived experiences of children's nursing students who have cared for a patient at, during, or immediately following end-of-life...
February 27, 2024: Nurse Education Today
https://read.qxmd.com/read/38481215/a-dutch-paediatric-palliative-care-guideline-a-systematic-review-and-evidence-based-recommendations-for-symptom-treatment
#3
JOURNAL ARTICLE
Kim C van Teunenbroek, Renée L Mulder, Inge M L Ahout, Karen G C B Bindels-de Heus, Catharina M Delsman-van Gelder, Annemie F S Galimont-Collen, Marinka A R de Groot, Katja M J Heitink-Polle, Jeffry Looijestijn, Maarten O Mensink, Selma Mulder, Jolanda H Schieving, Antoinette Y N Schouten-van Meeteren, Johannes M A Verheijden, Hester Rippen, Brigitt C M Borggreve, Leontien C M Kremer, A A Eduard Verhagen, Erna M C Michiels
BACKGROUND: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care...
March 13, 2024: BMC Palliative Care
https://read.qxmd.com/read/38481003/what-are-the-anticipated-benefits-risks-barriers-and-facilitators-to-implementing-person-centred-outcome-measures-into-routine-care-for-children-and-young-people-with-life-limiting-and-life-threatening-conditions-a-qualitative-interview-study-with-key-stakeholders
#4
JOURNAL ARTICLE
Hannah May Scott, Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Anna Roach, Katherine Bristowe, Myra Bluebond-Langner, Lorna K Fraser, Julia Downing, Bobbie Farsides, Fliss Em Murtagh, Clare Ellis-Smith, Richard Harding
BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research...
March 13, 2024: Palliative Medicine
https://read.qxmd.com/read/38450624/experiences-of-music-therapy-in-paediatric-palliative-care-from-multiple-stakeholder-perspectives-a-systematic-review-and-qualitative-evidence-synthesis
#5
JOURNAL ARTICLE
Victoria Kammin, Lorna Fraser, Kate Flemming, Julia Hackett
BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. AIM: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives...
March 7, 2024: Palliative Medicine
https://read.qxmd.com/read/38439152/-my-life-is-a-mess-but-i-cope-an-analysis-of-the-language-children-and-young-people-use-to-describe-their-own-life-limiting-or-life-threatening-condition
#6
JOURNAL ARTICLE
Katherine Bristowe, Debbie Braybrook, Hannah M Scott, Lucy Coombes, Daney Harðardóttir, Anna Roach, Clare Ellis-Smith, Myra Bluebond-Langner, Lorna Fraser, Julia Downing, Fliss Murtagh, Richard Harding
BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. DESIGN: Positioned within a s ocial constructivist paradigm, a secondary discourse analysis of s emi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language...
March 4, 2024: Palliative Medicine
https://read.qxmd.com/read/38404038/-what-about-me-lived-experiences-of-siblings-living-with-a-brother-or-sister-with-a-life-threatening-or-life-limiting-condition
#7
JOURNAL ARTICLE
Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger
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...
December 2024: International Journal of Qualitative Studies on Health and Well-being
https://read.qxmd.com/read/38346787/comparison-of-definitive-approaches-for-conotruncal-defects-following-bidirectional-glenn-procedure
#8
JOURNAL ARTICLE
Yuze Liu, Qiyu He, Zheng Dou, Kai Ma, Xinjie Lin, Shoujun Li
BACKGROUND: Staged repair is common for complex conotruncal defects, often involving bidirectional Glenn (BDG) procedure. Following the cavopulmonary shunt, both Fontan completion and biventricular conversion (BiVC) serve as definitive approaches. The optimal strategy remains controversial. METHODS: The baseline, perioperative and follow-up data were obtained for all paediatric patients with conotruncal defects who underwent BDG procedure as palliation in Fuwai Hospital from 2013 to 2022...
February 12, 2024: Heart
https://read.qxmd.com/read/38308603/investigation-of-the-impact-of-paediatric-hospices-on-the-quality-of-care-of-paediatric-nurses
#9
JOURNAL ARTICLE
Çiğdem Müge Haylı, Dilek Demir Kösem, Neşe Ataman Bor
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. METHODS: 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...
January 2, 2024: International Journal of Palliative Nursing
https://read.qxmd.com/read/38272741/shared-decision-making-and-communication-in-paediatric-palliative-care-within-uganda
#10
JOURNAL ARTICLE
J Downing, E Namukwaya, J Nakawesi, M Mwesiga
The first palliative care services were started in Uganda 30 years ago with services continuing to develop since then. The Ministry of Health and the Palliative Care Association of Uganda have played key roles in the development of paediatric palliative care in the country. There are a range of paediatric palliative care service providers in Uganda, and these have developed alongside educational programmes and research in PPC. Care is provided across the Uganda health system and across the age range from neonates through to adolescents and young adults...
January 24, 2024: Current Problems in Pediatric and Adolescent Health Care
https://read.qxmd.com/read/38262591/evaluation-of-paediatric-palliative-care-ambulance-plans-a-retrospective-study
#11
JOURNAL ARTICLE
Julianna Wan, Angela Vaughan, Elizabeth Shepherd, Sandra Coombs, Susan Trethewie, Tiina Jaaniste
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...
January 23, 2024: Journal of Child Health Care: for Professionals Working with Children in the Hospital and Community
https://read.qxmd.com/read/38252320/goal-directed-therapeutic-exercise-for-paediatric-posterior-fossa-brain-tumour-survivors-a-qualitative-analysis-of-experiences
#12
JOURNAL ARTICLE
Brooke E Kohler, Emmah Baque, Carolina X Sandler, Taryn Jones, Caroline O Terranova, Denise S K Brookes, Timothy Hassall, Natalie K Bradford, Stewart G Trost
PURPOSE: To explore child and parent experiences of a 12-week goal-directed therapeutic exercise intervention in paediatric posterior fossa brain tumours survivors and to identify features of the program that influenced program adherence and acceptability. METHODS: Eleven interviews were conducted; five parent-child dyads (mothers = 83%) and one parent only (mean child age = 10.6 ± 3.0 years; 83% male). Posterior fossa brain tumour survivors, who participated in a weekly goal-directed exercise program for 12 weeks, completed semi-structured interviews to discuss their experience of the program...
January 22, 2024: Supportive Care in Cancer
https://read.qxmd.com/read/38242597/racial-and-ethnic-inequities-in-the-quality-of-paediatric-care-in-the-usa-a-review-of-quantitative-evidence
#13
REVIEW
Natalie Slopen, Andrew R Chang, Tiffani J Johnson, Ashaunta T Anderson, Aleha M Bate, Shawnese Clark, Alyssa Cohen, Monique Jindal, J'Mag Karbeah, Lee M Pachter, Naomi Priest, Shakira F Suglia, Nessa Bryce, Andrea Fawcett, Nia Heard-Garris
Racial and ethnic inequities in paediatric care have received increased research attention over the past two decades, particularly in the past 5 years, alongside an increased societal focus on racism. In this Series paper, the first in a two-part Series focused on racism and child health in the USA, we summarise evidence on racial and ethnic inequities in the quality of paediatric care. We review studies published between Jan 1, 2017 and July 31, 2022, that are adjusted for or stratified by insurance status to account for group differences in access, and we exclude studies in which differences in access are probably driven by patient preferences or the appropriateness of intervention...
February 2024: Lancet Child & Adolescent Health
https://read.qxmd.com/read/38223237/palliative-care-services-in-paediatric-oncology-centres-across-europe-a-cross-sectional-survey
#14
JOURNAL ARTICLE
Eddy Carolina Pedraza, Peter Francis Raguindin, Manya Jerina Hendriks, Anna Katharina Vokinger, Eva De Clercq, Katja Rüesch, Lars Hjorth, André Oscar von Bueren, Eva Maria Tinner, Eva Bergstraesser, Lori Wiener, Gisela Michel
BACKGROUND: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. AIM: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). METHODS: Paediatric oncology centres across Europe were invited to complete an online questionnaire...
December 2023: EJC Paediatr Oncol
https://read.qxmd.com/read/38200971/enhancing-the-adult-and-paediatric-palliative-care-system-spanish-professionals-and-family-caregivers-suggestions-for-comprehensive-improvement
#15
JOURNAL ARTICLE
Laura Llop-Medina, Paula García-Muñoz, Francisco Ródenas-Rigla, Jorge Garcés-Ferrer
This research critically explores deficiencies in the palliative care system, focusing on evaluation and treatment aspects for both adult and paediatric patients. Using a qualitative methodology, the study engages healthcare professionals and family caregivers to uncover perspectives on the existing state of palliative care. Conducted through three focus groups and a semi-structured in-depth interview with participants recruited from Virgen de la Arrixaca University Clinical Hospital, this research illustrates critical issues, highlighting the insufficient healthcare workforce and resources to meet the comprehensive needs of patients and their families...
December 27, 2023: Healthcare (Basel, Switzerland)
https://read.qxmd.com/read/38197439/unravelling-the-role-of-mind-body-therapies-in-paediatric-palliative-care-a-narrative-review
#16
REVIEW
Luca Giacomelli, Simonetta Papa, Lara Vecchi, Anna Mercante, Franca Benini
AIM: Given the multifaceted nature of paediatric palliative care (PPC), integrative medicine and mind-body therapies, in particular, are increasingly used in this setting. However, to our knowledge, their use in PPC has never been specifically reviewed. Therefore, this work aims to provide a comprehensive overview of the application and possible beneficial effects of mind-body therapies in the PPC setting. METHODS: Papers about the use of meditation and mindfulness, biofeedback, hypnosis, yoga, tai chi and qi gong, imagery, creative outlets, and art therapy in PPC were identified by browsing PubMed and CINHAL...
January 10, 2024: Acta Paediatrica
https://read.qxmd.com/read/38186210/virtual-reality-intervention-as-support-to-paediatric-palliative-care-providers-a-pilot-study
#17
JOURNAL ARTICLE
Anna Mercante, Anna Zanin, Lara Vecchi, Valentina De Tommasi, Franca Benini
No abstract text is available yet for this article.
January 7, 2024: Acta Paediatrica
https://read.qxmd.com/read/38160047/yoga-versus-ipad-active-control-for-fatigue-in-paediatric-cancer-therapy-a-randomised-controlled-trial
#18
JOURNAL ARTICLE
Tal Schechter, Cassandra Tardif-Theriault, Nicole Culos-Reed, Victor Lewis, Andrea Orsey, Caroline Diorio, George A Tomlinson, Lillian Sung
OBJECTIVES: The primary objective was to determine if individualised yoga for hospitalised children receiving intensive chemotherapy was associated with less fatigue using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL MFS) compared with iPad control. METHODS: This was a multicentre randomised controlled trial of individualised yoga in paediatric patients aged 8-18 years who were inpatients receiving intensive chemotherapy for leukaemia, lymphoma or haematopoietic cell transplantation...
December 30, 2023: BMJ Supportive & Palliative Care
https://read.qxmd.com/read/38159953/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
#19
JOURNAL ARTICLE
Sidharth Vemuri, Jenny Hynson, Katrina Williams, Jenny O'Neill, Lynn Gillam
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...
December 30, 2023: BMJ Open
https://read.qxmd.com/read/38151429/questions-directed-to-children-with-diverse-communicative-competencies-in-paediatric-healthcare-consultations
#20
JOURNAL ARTICLE
Janet Watts, Stuart Ekberg, Myra Bluebond-Langner, Richard Langner, Sara Fleming, Susan Danby, Katie Ekberg, Patsy Yates, Natalie Bradford, Angela Delaney, Anthony Herbert
OBJECTIVE: This paper examines question-response sequences, in which clinicians asked questions to child patients who appear to interact using means other than the verbal mode of communication. METHODS: Conversation Analysis methods were used to study questions in 46 paediatric palliative care consultations. These questions were directed towards children who observably used vocalisations and embodied modes of communication (e.g., gaze, gesture and facial expressions) but did not appear to use the verbal mode...
December 13, 2023: Patient Education and Counseling
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