Musicotherapy and narrative creations with an adolescent admitted to the pediatric hematology-oncology department
adolescent; appendix; article; child; death; hematology; hospitalized adolescent; human; identity; injury; male; music therapy; Music therapy mediation; narrative; Narrative identity; oncology; Palliative care; palliative therapy; sound; symbolism; Symbolization; Trauma
This groundbreaking study focuses on the link between music-therapy and narrativity in a pediatric hematology-oncology unit. The goal is to observe and analyse the psychic processes in this therapeutic mediation. We aim to study the creative processes through the narrative productions of a sick and hospitalized teenagers. The interest of this original work with regard to previous research is to focus on the internal mechanisms of the patient and his narrative identity rather than on the active ingredient and the therapeutic method itself or its effect on a particular symptom. Based on a clinical situation of a young man of 19 years followed in onco-hematology, authors show how the creation of a sound link and subsequent narration on this sound object can be used as a "cordage" for seriously ill adolescents to endure the trauma of announcing the disease and announcing an imminent promise of death. We wish to support the issues of therapeutic support in order to demonstrate their resources with which they can subjectively assume their traumatic and painful journey, in this very specific space-time. His text, reproduced in appendix, is the subject of a literary analysis then of a psychopathological discussion. Copyright © 2019 Elsevier Masson SAS
Viode C; Ledeuil E; Crinquand S; Lignier B
Neuropsychiatrie de l'Enfance et de l'Adolescence.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.neurenf.2019.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.neurenf.2019.07.001</a>
Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats
awareness; brother; California; child; conference abstract; documentation; face; female; grief; hearing; heat; hot water; human; literature; male; memory; motion; palliative therapy; pediatrics; photography; physician; sound; teacher; teaching; touch; videorecording; voice
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in a pediatric palliative aquatics program operating within a pediatric palliative care facility in California. Evaluation: Electronic media has changed many facets of daily life, including providing palliative care to medically fragile children. Its use provides families with an "electronic biography" of their child and offers siblings a connection to a brother or sister who might have died before their birth. Oral histories are further supported with video data, thereby providing families with an enduring legacy. Loved ones unable to be present at events in "real time" can enjoy the electronic version of the child's experience. The legacy created in this manner exists beyond the grief of the present moment, extending into a time when painful memories become muted, allowing families to remember joyful events in the child's life. Families can photograph and video the child's responses to aquatic sessions, documenting movements and abilities virtually impossible for the child on land. Information can be shared with pediatric care practitioners using electronic media, providing them with detailed documentation of the patient's responses and enhanced abilities during warm water sessions. Consent is always obtained prior to facility use. As always, precautions against inappropriate use of electronic media during aquatics sessions must be assured. Public use of specific photos and film are sensitively screened for appropriateness. In researching program outcomes, the child ultimately becomes both subject and teacher during palliative aquatic sessions. Individual patient responses to sessions can be documented over time, allowing researchers opportunities to observe in slow motion subtle reactions of the patient to movement and touch. The aquatic practitioner-trainees' sense of touch, sight and hearing becomes more acute as s/he observes a child's facial and body reactions to movement, warmth, water pressure and sound. In our ongoing work of training new practitioners, appropriate use of electronic media and careful documentation of sessions has become one of our most valuable teaching tools.
Pyatt S; Fisher J M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
adolescent; poverty; intensive care; blood transfusion; palliative therapy; major clinical study; retrospective study; cancer patient; patient autonomy; sound; treatment withdrawal; religion; pregnancy; case study; physician; cancer therapy; childhood cancer; conference abstract; justice; medical record review; human; child; female; adult; patient care; surgery; drug withdrawal; multidisciplinary team; cancer center; Guatemala; bioethics; brain death; cancer surgery; substance abuse; treatment refusal
Bustamante Tuchez LM; Rivas S; Paz G; Valverde P; Zaidi A; Close P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Aims And Tasks In Parental Caregiving For Children Receiving Palliative Care At Home: A Qualitative Study
Child Parent Relation; Family Life; Home Care; Palliative Therapy; Qualitative Research; Child; Clinical Article; Controlled Study; Human; Interview; Personal Experience; Sound; Symptom; Thematic Analysis
In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Conclusion: Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened.(Table presented.) Copyright © 2017 The Author(s)
Verberne LM; Kars MC; Schouten-Van Meeteren AYN; Bosman DK; Colenbrander DA; Grootenhuis MA; van Delden JJ
European Journal Of Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1007/s00431-016-2842-3
End-of-life And Bereavement Care In Pediatric Intensive Care Units
Bereavement Support; Child Death; Family Interaction; Pediatric Intensive Care Unit; Child; Clinical Study; Doctor Patient Relation; Female; Health; Human; Male; Pain; Sound; Terminal Care; United States
Most childhood deaths in the United States occur in hospitals. Pediatric intensive care clinicians must anticipate and effectively treat dying children's pain and suffering and support the psychosocial and spiritual needs of families. These actions may help family members adjust to their loss, particularly bereaved parents who often experience reduced mental and physical health. Candid and compassionate communication is paramount to successful end-of-life (EOL) care as is creating an environment that fosters meaningful family interaction. EOL care in the pediatric intensive care unit is associated with challenging ethical issues, of which clinicians must maintain a sound and working understanding.
Suttle M; Jenkins T L; Tamburro R F
Pediatric Clinics Of North America
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.pcl.2017.06.012