Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Infant, Newborn; Child; Bereavement; Intensive Care Units, Neonatal; Interpersonal Relations; Attitude of Health Personnel; Qualitative Studies; Human; Support, Psychosocial; Music Therapy; Heart Rate; Telephone; Parental Attitudes; Memory; Thematic Analysis; Parental Role; Caregiver Attitudes; Semi-Structured Interview; In Infancy and Childhood; Attitude to Medical Treatment; Extended Family; Singing
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study evaluates the HeartSong music therapy intervention from parent and staff perspectives. Methods: A qualitative study assessing inclusion of HeartSong for family neonatal intensive care unit (NICU) care surveyed 10 professional caregivers comprising medical and psychosocial NICU teams anonymously reflecting their impressions of the intervention. Digital survey of parents/guardians contacted through semistructured phone interviews relayed impressions of recordings: subsequent setup, Song of Kin selection, and use of HeartSong, including thoughts/feelings about it as an intervention. Results: Professional and personal caregivers valued the HeartSong intervention for bereavement support, family support, including parental, extended family/infant support, and to enhance bonding. Emergent themes: memory-making, connectedness/closeness, support of parent role, processing mental health needs of stressful NICU days, and subsequent plans for lifelong HeartSong use. Therapeutic experience was named as a crucial intervention aspect and participants recommended the HeartSong as a viable, accessible NICU intervention. Implications for practice and research: HeartSong's use showed efficacy as a clinical NICU music therapy intervention for families of critically ill and extremely preterm infants, when provided by trained, specialized, board-certified music therapists. Future research focusing on HeartSong in other NICU populations might benefit infants with cardiac disease, parental stress, and anxiety attending to parent-infant bonding. Costs and time benefits related to investment are needed before implementation is considered.
van Dokkum NH; Fagan LJ; Cullen M; Loewy JV
Advances in Neonatal 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/10.1097/anc.0000000000001068" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001068</a>
The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines
Adolescence; Child; CINAHL Database; Health; Human; infant; In Infancy and Childhood; Nomenclature; Palliative Care; Practice Guidelines; Preschool; PsycINFO; PubMed; Reference Databases; Search Engines; spiritual care; systematic review
Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in pediatrics. Five online databases were searched systematically, in addition to a Google search. Analysis focused on the language used to determine the domains of PPC and on the composition of the PPC team. Guidelines express consensus on 4 core domains: physical, psychological, social, and spiritual care. However, conceptual vagueness exists with respect to the latter 3 because terminology is used inconsistently both within and across guidelines. An inconsistent use of terminology affects the quality of PPC nursing in various ways. Therefore, a shared understanding and unambiguous language must be envisaged. Furthermore, although guidelines agree on the most prominent team members, they do not clearly indicate how these occupational groups should collaborate.
Rost M; De Clercq E; Wangmo Tenzin; Elger BS
Journal Of Hospice & Palliative Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NJH.0000000000000387" target="_blank" rel="noreferrer">10.1097/NJH.0000000000000387</a>
George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Infant; Intensive Care Units Neonatal; Music Therapy; Utilization; United Kingdom; In Infancy and Childhood; Deficiency; Parent-Infant Bonding; Pulmonary Surfactants
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can empower parents to share culturally based, personal music with their infant to assist with developmental care and create precious memories. These positive experiences are vital to hold in order to continue bonds after death and assist in processing grief. This case study presents a full term infant with surfactant deficiency (R192). Weekly Music Therapy was provided on the Neonatal Intensive Care Unit (NICU) with parents and infant following the Rhythm Breath Lullaby: First Sounds approach. It was then used again at the end of the infant's life at the family home. Music Therapy provided a focus for the family while on the unit and supported family integrated developmental care of the infant. The relationship developed, a long with the music shared, then supported the family emotionally and physically as parent's held their baby at end of life. To our knowledge this is the first time Music Therapy has been provided on the NICU through to end of life at home with the same Music Therapist. Music Therapy on Neonatal Unit is uncommon in the UK but has potential to support infant comfort whilst supporting the sharing of parent identities. Music Therapy has the potential to provide a focus that enables parents, who have a heightened awareness of the proximity of loss, to interpret, play and comfort their infant.
Ormston K; Rose E; Gallagher K
Journal of Neonatal Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jnn.2022.01.011" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2022.01.011</a>
Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Collaboration; Child; Pain; Hospitals Pediatric; Critical Illness; Female; Male; Palliative Care; Quality of Life; Questionnaires; Needs Assessment; Data Collection; Cognition; Health Services Accessibility; Education; Community Health Services; Program Implementation; Child Advocacy; Human; India; Symptoms; Administration; International Agencies; Licensure; Pediatric Care; Only Child; In Infancy and Childhood; Academic Performance; Health and Welfare Planning; Health Facility Administrators; Personnel Health Facility; Psychosocial Functioning; Teamwork
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010--March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
Muckaden MA; Ghoshal A; Talawadekar P; Marston JM; Paleri AK
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener">10.25259/IJPC_20_2021</a>
Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.
Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Palliative Medicine
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/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener">10.1177/02692163221135350</a>
Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care
Child; Child Preschool; Confidence Intervals; Convenience Sample; Descriptive Statistics; Female; Heart Rate; Human; In Infancy and Childhood; Infant; Infant Newborn; Male; Multimethod Studies; Music Therapy; Only Child; Pain; Palliative Care; Pediatric Care; Pretest-Posttest Design; Prevention and Control; Psychosocial Factors; Purposive Sample; Quality of Life; Scales; Summated Rating Scaling; Thematic Analysis; Therapy
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established. The nature and extent of physiologic impacts of MT in PPC have not previously been reported. This study explores how MT contributes to psycho-physiological changes in children receiving palliative care. We used a convergent mixed-methods feasibility study with a pre–post design. MT sessions were delivered to children (0–18 years), who were registered with a statewide Pediatric Palliative Care Service. Pre–post measures of pain and heart rate were collected using validated and objective measures and analyzed using mixed-model analysis. Analysis of 36 MT sessions demonstrated a statistically significant reduction in pain scores and heart rate after MT sessions. Post measures of pain measured with Face, Legs, Activity, Cry, Consolability scale (FLACC scale) scores were −1.57 (95% confidence interval [CI] −2.31 to −0.83) and by Likert pain scale −2.03 (95% CI −2.79 to −1.27). Heart rate reduced by a mean of −7.6 beats per minute (95% CI −10.74 to −3.37). Five parents participated in semi-structured interviews. Following thematic analysis, two major themes emerged: (1) MT has a positive impact on physiological symptoms and (2) MT enhances the opportunity to experience joy. Results demonstrate the feasibility of study components and may inform future research design for a larger study. This research contributes to the limited evidence about non-pharmacological interventions enhancing the quality of life for children receiving PPC.
Delaney AM; Herbert AR; Bradford N; Bernard A
Music Therapy Perspectives
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/10.1093/mtp/miac003" target="_blank" rel="noreferrer noopener">10.1093/mtp/miac003</a>
Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians
Child; Communication; Critical Care; Female; Human; Inpatients; Intensive Care Units; Language; Male; Palliative Care; Pediatric; Physicians; Support; Preschool; Retrospective Design; Descriptive Statistics; In Infancy and Childhood; Audiorecording; child; human; female; male; Content Analysis; Field Notes; Fisher's Exact Test; Funding Source; Kappa Statistic; Mann-Whitney U Test; Patient-Family Conferences; Record Review; Psychosocial
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU physicians during family conferences. Design: A retrospective cohort review of ICU family conferences with and without the PC team. Setting: Forty-four bed pediatric ICU in a tertiary medical center. Participants: Nine ICU physicians and 4 PC providers who participated in 18 audio-recorded family conferences.
Ciriello AG; Dizon Zoelle B; October Tessie W
American Journal of Hospice & Palliative Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909117700101" target="_blank" rel="noreferrer noopener">10.1177/1049909117700101</a>