Pediatric Palliative Music Therapy: Pain, Distress, and Contentment in Children With Developmental Delays Associated With Life-Threatening Severe Neurological Impairment.
Children with life-threatening severe neurological impairment due to neurodegeneration, brain injury, gene-based conditions, or metabolic diseases are at high risk of pain and other symptoms and are often unable to communicate their needs. They may receive music therapy to aid in symptom management,...
| Published in: | Canadian Journal of Music Therapy Vol. 23; no. 1; pp. 22 - 40 |
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| Main Authors: | , , |
| Format: | research tables/charts Journal Article |
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Canadian Association of Music Therapists
2017
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=131679382&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 131679382 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 11991054 6MXT jtl: Canadian Journal of Music Therapy issn: 11991054 maglogo: N pubinfo: dt: 2017 vid: 23 iid: 1 pid: 19678 pub: Canadian Association of Music Therapists place: Ottawa, Ontario artinfo: ui: 131679382 131679382 131679382 131679382 ppf: 22 ppct: 18 formats: fmt: @attributes: type: P tig: atl: Pediatric Palliative Music Therapy: Pain, Distress, and Contentment in Children With Developmental Delays Associated With Life-Threatening Severe Neurological Impairment. aug: au: Clark, Beth A. Holsti, Liisa Siden, Harold (hal) affil: PhD Candidate, Interdisciplinary Studies Graduate Program, University of British Columbia Former music therapist, Canuck Place Children's Hospice sug: subj: Developmental Disabilities Nervous System Diseases Music Therapy Palliative Care Human Pediatrics Quality of Life Hospice Care Exploratory Research Multimethod Studies Checklists Scales Interrater Reliability ab: Children with life-threatening severe neurological impairment due to neurodegeneration, brain injury, gene-based conditions, or metabolic diseases are at high risk of pain and other symptoms and are often unable to communicate their needs. They may receive music therapy to aid in symptom management, but best practices for this population are not well established. The purpose of this investigation was to explore the effectiveness of live music therapy and vibroacoustic music therapy on reducing pain and distress and on increasing contentment. This mixed-methods exploratory study used a randomized within-subjects, crossover and multiple case study design. Participants were children ages 3 to 15, diagnosed with life-threatening severe neurological impairment, assessed as having a cognitive functioning level of one year or less. Data from the Non-Communicating Children's Pain Checklist--Revised and the Disability Distress Assessment Tool indicated low baseline pain and distress scores and high baseline contentment scores, creating a ceiling effect. However, behavioural observations revealed qualitative differences between responses to the two interventions, which were not captured through standardized measures. Recommendations include (1) the development of measurement tools that extend beyond negative symptoms in order to evaluate positive responses indicative of improved quality of life and (2) clinical research connecting behavioural cues with treatment objectives and corresponding music therapy interventions. Les enfants atteints de déficience neurologique sévère potentiellement mortelle causée par une neurodégénérescence, un traumatisme crânien, ou des maladies génétiques ou métaboliques, sont à risque de développer de la douleur ainsi que d'autres symptômes et, souvent, ils sont incapables de communiquer leurs besoins. Ils peuvent recevoir des services en musicothérapie afin d'aider à la gestion de leurs symptômes, mais les meilleures pratiques cliniques pour cette clientèle ne sont pas encore bien établies. Le but de cette recherche est d'explorer l'efficacité de la musicothérapie live et de la musicothérapie vibroacoustique sur la réduction de la douleur et de la détresse, et aussi sur l'augmentation du niveau de satisfaction. Cette étude exploratoire à méthodes mixtes utilise un plan à distribution aléatoire intrasujet ainsi qu'un protocole de recherche croisée et à études de cas multiples. Les participants, âgés de 3 à 15 ans, ont reçu un diagnostic de déficience neurologique sévère et ont été évalués comme ayant un niveau de fonctionnement cognitif de un an ou moins. Des données obtenues à l'aide des outils psychométriques Non-Communicating Children's Pain Checklist--Revised (NCCPC) et Disability Distress Assessment Tool (DisDat) ont indiqué un bas niveau de douleur et de détresse et un niveau élevé de satisfaction, créant ainsi un effet de plafonnement. Cependant, des observations comportementales révèlent des différences qualitatives entre les réactions aux deux interventions, lesquelles n'ont pas été saisies par des mesures standardisées. Les recommandations incluent (1) le développement d'outils de mesure qui vont au-delà des symptômes négatifs afin d'évaluerévaluent les réactions positives indicatrices de l'amélioration de la qualité de vie et (2) davantage de recherche clinique connectant les signes comportementaux aux objectifs de traitement et aux interventions musicothérapeutiques correspondantes. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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