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Music therapy and pediatric palliative care: songwriting with children in the end-of-life
... Two studies have a mixed-methods exploratory design: one looks at the effectiveness of live music therapy and vibroacoustic music therapy on reducing pain and distress and increasing contentment (Clark et al., 2017), while the other concerns the overall parental quality of life (Lindenfelser et al., 2012). Ten studies are case studies (Daveson and Kennelly, 2000;Forrest, 2014;Giordano et al., 2021Giordano et al., , 2022Hilliard, 2003;Ibberson, 1996;Mahoney, 2019;McLeod and Starr, 2021;Rapoport and Weingarten, 2014;Rigney, 2011). Three studies are surveys that present the results of the range of music therapy practice in children's hospices in the United Kingdom (Hodkinson et al., 2014), parents' experiences with music therapy , and music therapists working in paediatric medical settings in the United States (Knott et al., 2020). ...
... 53). In these studies (Clark et al., 2017;Giordano et al., 2022;Hilliard, 2003;Steinhardt et al., 2021), the goal of palliative measures is to enhance the quality of life in all phases of the illness by providing physical, emotional and psychosocial comfort and addressing spiritual concerns using an interdisciplinary approach. Walden et al. (2021) describe paediatric palliative care by mentioning that music therapists are often involved in pre-loss care. ...
... 131) Hilliard (2003) explains how the session ended with a songwriting activity. A total of 16 studies mention songwriting as a music therapy approach used in palliative care for children (Amadoru and McFerran, 2007;Clark et al., 2017;Daveson and Kennelly, 2000;Forrest, 2014;Giordano et al., 2021Giordano et al., , 2022Hilliard, 2003;Ibberson, 1996;Knapp, 2009;Knott et al., 2020;Lindenfelser et al., 2008Lindenfelser et al., , 2012Mahoney, 2019;Rigney, 2011;Scott et al., 2016;Steinhardt et al., 2021). Three studies observed that songwriting in music therapy allows patients to express themselves (Daveson and Kennelly, 2000;Giordano et al., 2021Giordano et al., , 2022. ...
The aim of this scoping review is to summarise the existing empirical evidence and produce an overview of the ways in which music therapy in paediatric palliative care is described in the literature, with a specific focus on hospital-at-home. It was performed through searches undertaken in eight databases and completed using the methodological framework proposed by Arksey and O’Malley. The findings of the scoping review indicate the following: (1) there is no clear definition of music therapy in paediatric palliative care; (2) there is limited research on paediatric palliative care; (3) music therapy in hospital-at-home offers isolated patients and families a feeling of connectedness; (4) both expressive and receptive music therapy approaches are included in the existing studies, emphasising the need to adapt to the patient’s age, abilities, interests and energy levels; and (5) the outcomes of the music therapy discussed in the literature focus on enhancing the quality of life. Overall, music therapy appears to be an asset for the interdisciplinary team working to improve quality of life, but research methods which respond specifically to the voices of the children and adolescents must be developed to improve paediatric palliative care further.
... In particular, its positive effects on patient anxiety, stress, mood, perceived quality of life, and sense of isolation [1,9], make it particularly suitable for use in pediatric oncology [3]. Importantly, the interventions can be tailored to the patient's needs to facilitate emotional expression, communication, and social interaction, allowing them to express their (positive and negative) feelings in a safe and non-judgmental environment [10][11][12] and interact with peers going through similar experiences, thus promoting social skills useful to contrast the loneliness that accompanies the hospitalization period [13][14][15]. MT not only benefits patients but also offers opportunities for family bonding and emotional support for caregivers [15]. ...
Background: Musicotherapy (MT) is a non-pharmacological, art-based intervention that employs music experiences within a therapeutic alliance to attend to clients’ physical, emotional, cognitive, and social requirements. This is the first study aiming at investigating the impact of MT on the psychological facets of children suffering from cancer. Methods: The study, combining the AQR and m-YPAS assessment tools, evaluated behavioral, sound–musical, and interactive parameters in pediatric oncology patients undergoing MT sessions during hospitalization. Fifty patients admitted to the Paediatric Oncology and Haematology Unit at Policlinico S. Orsola Hospital in Bologna, Italy, were enrolled, irrespective of their treatment regimen. Data collection occurred on the first day of the MT session between 3 p.m. and 5 p.m., with observations conducted by independent observers. In addition to traditional statistical analysis, network analysis was used to explore the combined interactions of all parameters, effectively discerning the distinctive roles played by each one during therapy sessions and their influence on all others. Results: Network analysis highlighted distinct patterns of interactions among parameters during the various sessions, emphasizing the role of positive emotions and a calm setting, the child’s ability to take the initiative in sessions, their sense of agency, and the parent’s role in guiding them. Significant differences were recorded at each time point between all variables considered. Conclusions: The results of this innovative study may pave the way for future multicenter studies aimed at further exploring the role of MT in children undergoing both curative and palliative treatments for cancer.
... This ultimately facilitated better management of feelings and transformed their state of mind, which improved their quality of life. Furthermore, the work published by Giordano et al. (2022) found that MT served as an effective intervention specifically within paediatric palliative care because it facilitated emotional expression in terminally ill patients, thus promoting relaxation, decreasing social isolation, and increasing communication and self-expression. ...
... Clients have been prompted to write songs based on their journey of the illness, for someone specific in their lives, on hope and faith, expressing their emotions and thoughts, spirituality, review of their lives, on relationships and so on. 22,23 In a specific study, song writing was used as a channel of expression and communication, providing the client space to make his choice at free will. 24 This technique allows one to understand and bring out their thoughts and expressions, providing a basis for awareness of themselves and their situation acting as a component of comprehensibility in SOC. ...
Palliative care is a vulnerable area of practice that requires a team to cater to the needs of physical, psychological, social, and spiritual needs and the requirements for unmet needs for patients under palliative care is quite large and increasing. India is creating awareness for palliative care stand at the foremost requirement as well as who can cater to patients who require palliative care. Along with many other treatments, therapies and supports being provided to patients, music therapy may play the role with preventative and curative periods of treatment, as well as support to cope and acceptance toward the inevitable for the patient as well for the caregivers. Music therapy provides a biopsychosocial and holistic approach to palliative care. Musical interventions include methods of receptive, improvisation, recreative, and creative spanning across many techniques and have been found to help with coping, expressing emotions, regulating emotions, acceptance, managing pain, and distress, supportive to caregivers through grief and bereavement. This paper hopes to provide an insight into the role of music therapy as a Salutogenic approach within a biopsychosocial framework and its need to be accepted in the Indian context.
... Attraverso un uso pianificato e sistematico della musica e delle attività musicali, la musicoterapia permette di migliorare parametri fisiologici, di gestire ansia e stress, di favorire cambiamenti positivi nell'umore e negli stati emotivi, di controllare il dolore ed il disagio ad esso connesso 9-13 , inoltre sostiene la partecipazione attiva e positiva del paziente ai trattamenti, supporta i bisogni spirituali ed esistenziali suoi e dei caregiver, stimola le funzioni cognitive e potrebbe anche diminuire i tempi di degenza [14][15][16][17] . ...
Music is an important tool to improve our human condition and better our mood, but the interesting thing is that some types of music seem to have "medicinal" qualities, so that they have coined the term "music therapy" to define the potential benefits on our body. However, we do not know if these effects can be measured and reproduced, as well as they are able to work on the cardiovascular system. Listening to music allows to explore deep and complex aspects of our soul, but also modulates the rhythm of some physiological components of our heart. The type of music that represents this particular form of sensitivity is probably the Baroque, but there are examples in any epoch and throughout all genres of music: from symphonic to rock, from new age to pop. Performing characters from different periods such as Mozart or the Beatles have left us masterpieces that can unexpectedly improve body and soul at the same time.
... Studies have explored how MT can contribute to psychophysiological changes [18] and improve quality of life in children receiving palliative care [19]. ...
Unlabelled:
Music therapy (MT) is a complementary therapy offered to children, young adults, and their families in pediatric oncology and palliative care. We performed a survey to collect information about MT in pediatric oncology in Italy. The outbreak of COVID-19 unavoidably changed the scenario of MT, suggesting some considerations presented in this survey. 27/32 (84.4%) centers belonging to the Infections and Supportive Therapy Working Group of Association of Pediatric Hematology and Oncology (AEIOP) completed in 2 different time points (T1 and T2) an online survey on MT, before and after COVID-19 pandemia. Different kinds of music approach were used taking care of patients in 21/27 centers, while in 14/21 (66%), a specific project of MT conducted by a music therapist was present. In 6/14 centers, MT activities were delivered for < 3 h/week, in 3 centers for > 3 and < 10 h/week, and in the remaining 5 for > 3 h/week. MT sessions were in different areas, day hospital, or ward (patient rooms, operating rooms, waiting rooms), on an individual basis or by groups. Patients were invited to MT by psychologists, caring physician, or nurse, or on equipé decision. MT was evaluated with tools self-made by music therapist in 11/14 centers. After COVID-19, MT has been withdrawn in 3 centers, sessions in the waiting rooms were reduced, individual sessions were preferred, and enrollment by multidisciplinary teams increased.
Conclusion:
This survey represents the starting platform to compare and discuss different experience of MT in AIEOP centers, to implement MT in pediatric oncology for a more qualified assistance to patients, and to improve quality of care.
What is known:
• Music therapy in pediatric oncology and palliative care can be used for the management and prevention of various somatic and psychological symptoms of patients and often is provided to children together with their families. • In Italy the application of Music therapy in the AIEOP pediatric oncology centers is constantly increasing, but due to the outbreak of Covid-19 Pandemic, Italian pediatric oncology departments were obliged to adopt restrictive measures.
What is new:
• Although the majority of Centres did not abrogate MT interventions, judgment about limitation should be carefully taken since MT helps children and even more adolescents in their fight against cancer. • The best practice of Music therapy in pediatric oncology requires communication and collaboration among qualified music therapists and multidisciplinary care team, using a model of family-centered care that actively involves parents/ caregivers in assessment, treatment planning, and care delivery.
Background: Adolescents and young adults (AYAs) living with advanced cancer may experience a heightened risk for existential distress. Addressing AYAs’ hopes can stimulate a dialogue about their concerns, values, and goals, provide a path to holistically support their existential needs, and potentially alleviate their distress. This study aimed to evaluate hope's role in a sample of AYAs living with advanced cancer. Method: This study used a Husserlian phenomenology-informed descriptive qualitative research design to elicit AYAs’ experiences with hope while living with advanced cancer. Participants were virtually recruited from an academic medical center and an online non-profit organization. Thematic analyses were performed across the data set to identify final themes. Results: Fifteen AYAs aged 12–21 years diagnosed with advanced hematological (80%) or solid (20%) malignancies participated in this study. A main theme of Simple Supports of Hope with a subtheme of Diversion was identified. Participants described music as a form of diversion, which supported their hope. Participants found listening to music calming and comforting and helped them cope with their distress. Performing music provided a creative outlet for negative feelings associated with cancer treatment. Participants reported creating music transformed and deintensified the treatment environment and helped spread hope to healthcare staff. Discussion: AYAs may intentionally use music to improve emotional expression, empowerment, connection, and coping strategies throughout the treatment process for cancer. Additional research needs to be conducted exploring the use of music interventions such as therapeutic songwriting or compositional music therapy to assist AYAs with building coping strategies during treatment for cancer.
BACKGROUND
Preterm birth contributes to adverse mental health outcomes of parents dealing with a premature neonate. The main objective of this study is to determine whether music therapy (MT) songwriting during the infants’ stay in the neonatal intensive care unit (NICU) is superior to standard care in reducing the risk of postpartum depression in high-risk parents of preterm children throughout the hospital treatment. The secondary objectives include assessment of effectiveness of MT in other aspects of mental health (anxiety level, perceived stress, mental wellbeing, coping, resilience). Furthermore, this trial will evaluate the medical and social factors that may be associated with the effects of MT songwriting.
PARTICIPANTS AND PROCEDURE
The study design is a sequential mixed method study with a dominant status QUAN to qual. The quantitative trial was designed as a parallel, multicenter, pragmatic, randomized controlled trial. The qualitative study is a descriptive phenomenological study that seeks to understand the lived experiences of participants exposed to songwriting. Participants are parents of premature infants hospitalized in NICU (106 families) in 5 hospitals, in Colombia and Poland. Intervention: 3 MT songwriting sessions per week across 3 weeks. Primary outcome: the risk of postnatal depression; secondary outcomes: anxiety level, mental wellbeing, resilience, stress, coping.
RESULTS
The results will be analyzed quantitatively and qualitatively.
CONCLUSIONS
This study will provide a report on the effectiveness of MT songwriting on mental health in at-risk parents of preterm infants.
Hospitalized COVID‑19 patients are vulnerable to different degrees of stress disorders as well asdepression, anxiety and fear. The aim of this study was to evaluate the feasibility of introducing Music therapy on site with Covid‑19 patients and investigating the immediate effects a single session has on anxiety, heart rate (HR), oxygen saturation (O2Sat) and satisfaction compared to standard care.
A randomized controlled trial of 40 patients was conducted. Participants were assigned to control group (CG) or the treatment group (MG). MG received an individual single session of music therapy in presence. CG received standard care. MG and CG were subjected to identical measurements (pre‑ during‑post) of the parameters STAI‑Y, HR and O2Sat. Participants in MG were asked to fill in an optional open‑ended question concerning their experience with music therapy. Significant difference in anxiety levels between scores in MG and CG (34.50 (23.25–40.00) vs 45.00(38, 25–54.00); p = 0.000)
was observed. MG compared to CG had statistically significantly higher values of O2Sat (97.50 (96.25– 99.00) versus 96.00 (96.00–98.00); p = 0.026). Results show the feasibility of introducing music therapy as a supporting complementary/non‑pharmacological intervention on site in Covid‑19 patients. A single session of music therapy improves O2Sat and can significantly reduce anxiety.
Background
Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.
Aim
Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors.
Design
Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology.
Data sources
Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report.
Results
Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality.
Conclusion
The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.
Keywords: end of life, musictherapy, pediatric cancer, songwriting, supportive care
End-of-life accompaniment requires even greater care of the patient and their family by the multi-disciplinary
team, which requires a clear, wellorganized interdisciplinary and interprofessional approach. Musictherapy
(MT) is often use as a complementary approach to improve a person’s quality of life by helping to relieve
symptoms, addressing psychological needs, offering support and comfort, facilitating communication, and
meeting spiritual needs.
Through songwriting, Ettore, a teenager was able to make choices and act on his own will. Songwriting
represented a channel for effective and powerful communication and expression. The song became the
means by which the relationship with the team was maintained and deepened; it became something tangible,
a product with its own consistency, a further bond that unites Ettore to his family to this day.
The influence of music therapy (MT) on preoperative anxiety in children affected by leukemia undergoing invasive diagnostic procedures (IP) was evaluated. The participants were assigned to two different types of preoperative preparation for IP: MT intervention or standard care. Preoperative anxiety scores were measured with the Modified Yale Pre-operative Anxiety Scale. Interviews with medical staff were performed.
A lower preoperative anxiety score in the MT group (n = 29) compared with standard care (n = 19) was observed. Results support the potential effectiveness of integrating music therapy with a pharmacological approach to reduce preoperative anxiety in IP. More than 90% of the medical staff (n = 19) were very satisfied with the ability of MT to distract the patient and support the staff.
Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.
Importance:
Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory.
Objective:
To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs.
Design, setting, and participants:
Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate).
Main outcomes and measures:
Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results.
Results:
Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001).
Conclusions and relevance:
Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
Songwriting as a therapeutic intervention has received increasing attention in the field of music therapy over the past decade however much of the publications focus on clinical outcomes rather than methods of practice. This paper, part of a two-part research report into trends in the clinical practice of songwriting, aims to describe the most frequently employed goal areas across a range of clinical populations and compare these findings with the published literature. Responses to a 21-question online survey were obtained from 477 professional music therapists practicing in 29 countries which focused on approaches to songwriting within their practice with a single clinical population. Chi-square or comparable Exact tests (Fisher-Freeman-Halton) were applied to the data and significant associations were found according to different clinical populations particularly with respect to the aims of songwriting in clinical practice and the frequency with which songwriting is employed in practice. The data highlights that songwriting is frequently employed in developmental disability and ASD practice, with reports on songwriting with these diagnostic groups being underrepresented in the music therapy literature. The survey identified that the most frequently endorsed goal areas align with the literature base and included a) experiencing mastery, develop self-confidence, enhance self-esteem; b) choice and decision making; c) develop a sense of self; d) externalising thoughts, fantasies, and emotions; e) telling the client's story; and f) gaining insight or clarifying thoughts and feelings.
Therapeutic Songwriting provides a comprehensive examination of contemporary methods and models of songwriting as used for therapeutic purposes. It describes the environmental, sociocultural, individual, and group factors shaping practice, and how songwriting is understood and practiced within different psychological and wellbeing orientations.
Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for patients with lung cancer. In this study, the authors tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I through IV nonsmall cell lung cancer.
FCGs who were identified by patients as their primary caregivers were enrolled in a prospective, quasi-experimental study in which the usual care group was accrued first followed by the intervention group. FCGs in the intervention group were presented at interdisciplinary care meetings, and they also received 4 educational sessions organized in the physical, psychological, social, and spiritual domains. The sessions included self-care plans to support the FCG's own needs. Caregiver burden, caregiving skills preparedness, psychological distress, and FCG quality of life were assessed at baseline and after 12 weeks using validated measures.
In total, 366 FCGs were included in the primary analysis. FCGs who received the interdisciplinary palliative care intervention had significantly better scores for social well being (5.84 vs 6.86; P < .001) and had lower psychological distress scores (4.61 vs 4.20; P = .010) at 12 weeks compared with FCGs in the usual care group. FCGs in the intervention group also had significantly less caregiver burden compared with FCGs in the usual care group (P = .008).
An interdisciplinary approach to palliative care in lung cancer resulted in statistically significant improvements in FCG's social well being and psychological distress and in less caregiver burden. Cancer 2015. © 2015 American Cancer Society.
© 2015 American Cancer Society.
Palliative care programs in pediatric settings exist to support patients and families when a life-threatening illness results in an uncertain prognosis. Consistent and open communication within the healthcare team, as well as between the team and families, is vital for providing optimal care while simultaneously instilling a sense of choice and control in patients and family members. Parents value a trusting relationship with medical staff in order to be a partner in the child's care. Music therapy is seen as an integral component within the scope of multi-disciplinary services offered to provide patient- and family-centered care, encourage positive coping, and enhance quality of life. Grounded in a palliative care philosophy, a sense of hope is always encouraged despite the circumstances, although various ‘lenses’ may be offered to help reframe hope. Board-certified music therapists provide creative opportunities for expression and assist in pain management using non-pharmacological modalities. Through literature review and case examples, this study aims to share how music therapy interventions, such as songwriting, help to make positive memories and provide support during treatment and at end-of-life. The benefits of integrating music therapy interventions into pediatric palliative care services in order to encourage bonding and legacy building from a parent or sibling perspective will be highlighted. Aspects of developing both a music therapy and palliative care program in a pediatric setting will be discussed. Opportunities to educate healthcare providers on utilization of services will also be shared.
This article explores creative songwriting in therapy at the end of life and in bereavement by focussing on the experience of the authors, whose work as music therapists in hospice settings includes writing songs with clients. It draws upon their work as practitioners, teachers and researchers, and is also informed by the published literature and work of other music therapists who have specialised in this field. A brief introduction to music therapy is followed by the contextualisation of creative songwriting within the authors' experience of the therapeutic relationship. Using case study vignettes the article provides an insight into the clinical practice of the authors and into the world of their clients at what can be an extraordinary time in their lives. The songs that emerge in therapy are often emotional, challenging and deeply thought provoking, and can provide a valuable contribution to our understanding of the experience of terminal illness, death and loss.
Music is central in most children's lives. Understanding its relevance will advance efficacious pediatric supportive cancer care. Qualitative clinical data-mining uncovered four music therapists' perspectives about music and music therapy's relevance for pediatric oncology patients up to 14 years old. Inductive and comparative thematic analysis was performed on focus group transcripts and qualitative interrater reliability integrated. Music can offer children a safe haven for internalizing a healthy self-image alongside patient identity. Music therapy can calm, relieve distress, promote supportive relationships, enable self-care, and inspire playful creativity, associated with "normalcy" and hope. Preferred music and music therapy should be available in pediatric oncology.
Objective:
The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness.
Methods:
Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document.
Results:
AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.
Conclusions:
AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.
Reports of family satisfaction with pediatric palliative care have been limited. This knowledge is critical for both program development and furthering understanding of needs. The purpose of this study was to assess parents' perceptions about whether a pediatric palliative care program was providing key elements of pediatric palliative care as described in the literature and to assess parental satisfaction with services. Data were collected from 65 parents, using a tool developed for the project, whose children died while receiving services from Rainbow Kids Palliative Care, a program of Primary Children's Medical Center, and the Department of Pediatrics, University of Utah, Salt Lake City, Utah. Respondents reported that the Rainbow Kids team had provided emotional support, helped with decision making and communication, and that their children's symptoms were managed. Furthermore, parent respondents expressed high levels of satisfaction with services from the Rainbow Kids team.
Music therapy is increasingly used in end-of-life care, with a growing number of music therapists being employed in hospices and hospital-based palliative care programs each year. Music therapy in end-of-life care aims to improve a person's quality of life by helping relieve symptoms, addressing psychological needs, offering support and comfort, facilitating communication, and meeting spiritual needs. In addition, music therapists assist family and caregivers with coping, communication, and grief/bereavement. Music therapy requires the implementation of a music intervention by a trained music therapist, the presence of a therapeutic process, and the use of personally tailored music experiences. These music experiences may include listening to live, therapist-composed, improvised, or pre-recorded music, performing music on an instrument, improvising music spontaneously using voice or instruments, composing music, and music combined with other modalities (e.g. movement, imagery, art). Results indicate that music therapy may have a beneficial effect on the quality of life of people in end-of-life care. However, the results stem from a limited number of studies and the quality of the evidence is not strong. More research is needed. No evidence of effect was found for pain or anxiety. This may be due to the fact that only two studies with very small samples examined the effects of music therapy on these outcomes. There were insufficient data to examine the effect of music therapy on other physical, psychological, or social outcomes. More research is needed.
Educators for the health professions are confronted with choices that could have momentous significance for the future of health care. Educators can continue to try to force medicine into the Procrustean Bed of the biomedical model, with all the divisiveness and fragmentation encouraged by its inherent reductionism and dualism, or they can consider a more comprehensive model that emphasizes psychosocial skills based on a systems approach, with its potential to enhance collaboration, communication and complementarity among the various health professions and enhance the general level of competence of each. That choice and opportunity is especially crucial for those just beginning their education because how the health sciences and health care evolve in the future is to a large degree determined by the approach health profession educators take in training fledgling providers-to-be.
This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness.
The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff.
Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant.
Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.
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