ABSTRACT
Music therapy interventions target biopsychosocial outcomes and are a non-pharmacological option for integrated pain management. To date, most music and pain studies have focused on acute pain, passive music experiences, and in-person delivery. The purpose of this study was to examine feasibility and acceptability and determine proof-of-concept for a newly developed telehealth music imagery (MI) intervention for Veterans with chronic pain. A single-group proof-of-concept pilot study was conducted with Veterans with chronic pain (nâ =â 8). Feasibility was assessed through examination of recruitment, retention, and session/measure completion rates; acceptability through participant interviews; and whether the intervention resulted in clinically meaningful change scores (pre- to post-intervention) on measures of pain, anxiety, and depression at the individual level. For Veterans who passed eligibility screening, we had an enrollment rate of 89%, with good retention (75%). Overall, participating Veterans found the intervention acceptable, identified specific challenges with technology, and recommended an increased number of sessions. Preliminary outcome data for pain, anxiety, and depression were mixed, with some Veterans reporting clinically meaningful improvements and others reporting no change or worsening symptoms. Findings informed modifications to the telehealth MI intervention and the design of a larger pilot randomized controlled trial to assess feasibility and acceptability of the modified intervention in a larger population of Veterans with chronic pain using additional measures and a control condition.
ABSTRACT
BACKGROUND: Children with cancer (ages 3-8 years) and their parents experience significant, interrelated distress associated with cancer treatment. Active music engagement (AME) uses music-based play and shared music-making to mitigate this distress. To advance our understanding about how AME works and its essential features, we interviewed parents who received the AME intervention as part of a multi-site mechanistic trial. The purpose of this qualitative analysis was to describe parents' experiences of AME for themselves and their child and to better understand how the intervention worked to lower parent-child distress. PROCEDURE: We conducted a total of 43 interviews with parents/caregivers, and purposively analyzed all interviews from underrepresented groups based on race/ethnicity and parent role. We used thematic analysis and achieved thematic redundancy after analyzing 28 interviews. RESULTS: The following statement summarizes resulting themes: Music therapists skillfully use AME to create a safe and healthy space (Theme 1), where parents/children have transformative experiences (Theme 2) that lead to learning and enactment (Theme 3) of new skills that counteract suffering (Theme 4) through empowerment, connectedness, and sustained relief. CONCLUSIONS: This work elucidates how AME works to counteract stressful qualities of cancer treatment. As parents witnessed positive and transformative changes in their child, they experienced relief and reported shifts in their perspective about cancer treatment. This led to learning and use of music as a coping strategy that extended beyond therapist-led sessions. Accessible, music-based interventions, like AME, offer a developmentally appropriate and effective way to support parents and young children during treatment.
Subject(s)
Music Therapy , Music , Neoplasms , Child, Preschool , Humans , Coping Skills , Music Therapy/methods , Neoplasms/therapy , Parents , Stress, Psychological/therapy , Child , Multicenter Studies as Topic , Clinical Trials as TopicABSTRACT
Background: Despite an increased focus on the importance of spirituality to human health, including adolescent health outcomes there remains an absence of evidence-based programs to address the spiritual needs of patients and families. A critical barrier is the absence of a clear conceptual understanding and operational definitions of spirituality for adolescents/young adults (AYAs) with cancer. The purposes of this concept analysis were to (a) clarify the concept of spirituality in the context of the AYAs' cancer experience and (b) generate a definition based on a review of the literature examining spiritual development and the role of spirituality in AYAs' health and cancer treatment. Method: We used Roger's evolutionary concept analysis method to identify antecedents, attributes, and consequences of spirituality in the context of AYAs' cancer using thematic analysis and included identification of case exemplars. Results: Of the 86 articles identified, 21 met our inclusion criteria. Analysis revealed four attributes of spirituality in AYAs with cancer: meaning and purpose, connectedness, life-long universal experience, and independent of or related to religion and faith traditions. Identified antecedents included the presence of spiritual resources, chronic illness, belief, or wonder about a higher power, and existential questions. Identified consequences included hope, meaning, feelings of peace, and enhanced well-being and illness acceptance. Based on the findings, we generated a definition of spirituality in AYAs with cancer. Discussion: Findings inform the development of measures and spiritual care interventions specific to AYAs with cancer. An important limitation to address in future research is the absence of AYAs' first-person accounts of their own spirituality.
Subject(s)
Neoplasms , Spiritual Therapies , Humans , Adolescent , Young Adult , Spirituality , Religion , Emotions , Neoplasms/therapyABSTRACT
OBJECTIVE: This trial examined the effects of proximal/distal mediators and moderators of an Active Music Engagement (AME) intervention on young child/parent distress, quality of life, and family function outcomes. METHODS: Child/parent dyads (n = 125) were randomized to AME or Audio-storybooks attention control condition. Each group received 3 sessions with a credentialed music therapist for 3 consecutive days with data collection at baseline, post-intervention (T2), and 30-days later (T3). Potential proximal mediators included within session child and parent engagement. Potential distal mediators included changes in perceived family normalcy, parent self-efficacy, and independent use of play materials. Potential moderators included parent/child distress with prior hospitalizations, parent traumatic stress screener (PCL-6), and child age. Outcomes included child emotional distress and quality of life; parent emotion, traumatic stress symptoms (IES-R), well-being; and family function. Mediation effects were estimated using ANCOVA, with indirect effects estimated using the percentile bootstrap approach. Moderation effects were tested by including appropriate interaction terms in models. RESULTS: No significant mediation effects were observed. Child distress with prior hospitalizations moderated AME effects for IES-R intrusion subscale scores at T2 (P = .01) and avoidance subscale scores at T3 (P = .007). Traumatic stress screener scores (PCL-6) moderated intervention effects for IES-R hyperarousal subscale scores at T2 (P = .01). There were no moderation effects for child age. CONCLUSIONS: AME is a promising intervention for mitigating traumatic stress symptoms and supporting well-being in parents of children with cancer, particularly for parents who screen high for traumatic stress and whose children are more highly distressed with hospitalization.
Subject(s)
Music Therapy , Neoplasms , Parents , Stress Disorders, Traumatic , Child , Child, Preschool , Humans , Emotions , Music , Neoplasms/psychology , Parents/psychology , Quality of Life , Stress Disorders, Traumatic/etiology , Stress Disorders, Traumatic/psychology , Stress Disorders, Traumatic/therapyABSTRACT
BACKGROUND: Creative arts therapies (CAT) are employed throughout the Veterans Health Administration (VHA) and are predominantly delivered in-person. Though telehealth delivery of CAT was used at several VHA facilities to increase services to rural Veterans, due to guidance from the Center for Disease Control and VHA that temporarily suspended or reduced in-person services, there was a large increase of CAT therapists enterprise-wide who adopted telehealth delivery. The aims of this study were to evaluate adoption and adaptation of CAT telehealth delivery and identify related barriers and facilitators. METHODS: We deployed a survey guided by the Consolidated Framework for Implementation Research and administered it via email to all VHA CAT therapists (N = 120). Descriptive statistics were used to summarize data and responses were compared based on therapists' age, years of experience and CAT discipline. Open survey field responses were summarized, qualitatively coded, and analyzed thematically. RESULTS: Most therapists (76%) reported adopting telehealth with 74% each delivering > 50 CAT sessions in the prior year. Therapists adapted interventions or created new ones to be delivered through telehealth. Barriers included: technical challenges, control of the virtual space, and building rapport. Facilitators included added equipment, software, and infrastructure. CAT therapists adapted their session preparation, session content, outcome expectations, and equipment. CAT therapists reported being able to reach more patients and improved access to care with telehealth compared to in person visits. Additional benefits were patient therapeutic effects from attending sessions from home, therapist convenience, and clinician growth. CONCLUSIONS: VHA CAT therapists used their inherent creativity to problem solve difficulties and make adaptations for CAT telehealth adoption. Future studies may explore CAT telehealth sustainment and its effectiveness on clinical processes and outcomes.
Subject(s)
Telemedicine , Veterans , Humans , Veterans Health , Surveys and QuestionnairesABSTRACT
BACKGROUND: Music therapy is a standard palliative care service in many pediatric and adult hospitals; however, most research has focused on the use of music to improve psychosocial dimensions of health, without considering biological dimensions. This study builds on prior work examining psychosocial mechanisms of action underlying an Active Music Engagement (AME) intervention, designed to help manage emotional distress and improve positive health outcomes in young children with cancer and parents (caregivers), by examining its effects on biomarkers of stress and immune function. METHODS: This two-group randomized controlled trial (R01NR019190) is designed to examine biological mechanisms of effect and dose-response relationships of AME on child/parent stress during the consolidation phase of Acute B- or T-cell Lymphoblastic Leukemia (ALL) and T-cell Lymphoblastic Lymphoma (TLyLy) treatment. Child/parent dyads (n = 228) are stratified (by age, site, risk level) and randomized in blocks of four to the AME or attention control condition. Each group receives one session (30-minutes AME; 20-minutes control) during weekly clinic visits (4 weeks standard risk B-cell ALL; 8 weeks high risk B-cell ALL/T-cell ALL/TLyLy). Parents complete questionnaires at baseline and post-intervention. Child/parent salivary cortisol samples are taken pre- and post-session (sessions 1-4). Child blood samples are reserved from routine draws before sessions 1 and 4 (all participants) and session 8 (high risk participants). We will use linear mixed models to estimate AME's effect on child/parent cortisol. Examining child/parent cortisol as mediators of AME effects on child and parent outcomes will be performed in an ANCOVA setting, fitting the appropriate mediation models using MPlus and then testing indirect effects using the percentile bootstrap approach. Graphical plots and non-linear repeated measures models will be used to examine dose-response relationship of AME on child/parent cortisol. DISCUSSION: During pediatric cancer treatment there are special challenges that must be considered when measuring cortisol and immune function. In this manuscript we discuss how we addressed three specific challenges through our trial design. Findings from this trial will increase mechanistic understanding of the effects of active music interventions on multiple biomarkers and understanding of dose-response effects, with direct implications for clinical practice. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04400071.
Subject(s)
Lymphoma , Music , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Adult , Humans , Child , Child, Preschool , Hydrocortisone , Parents/psychology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Biomarkers , Randomized Controlled Trials as TopicABSTRACT
Treatment fidelity is the use of methodological strategies to monitor and enhance reliability and validity of behavioral intervention trials. Despite availability of guidelines and checklists, treatment fidelity remains underreported, hindering evaluation, interpretation, and cross-study comparisons. Treatment fidelity is particularly important for music interventions given the inherent complexity of musical stimuli and flexibility required for tailored delivery. The purpose of this paper is to define and describe treatment fidelity strategies for our trial of a music-based play intervention for young children with cancer and parents grounded in the NIH Behavior Change Consortium Treatment Fidelity Recommendations. We report strategies for all 5 areas: study design, training providers, delivery of treatment, receipt of treatment, and enactment of treatment skills. We also discuss 4 challenges our team encountered, including: (1) standardizing live music delivery, (2) defining boundaries for tailored intervention delivery, (3) managing extended time between participants, and (4) minimizing risk for bias. This paper expands on current fidelity literature and may provide a working model for other investigators examining dyadic and/or active music interventions.
Subject(s)
Behavior Therapy , Neoplasms , Child , Humans , Child, Preschool , Reproducibility of Results , Neoplasms/therapy , Research DesignABSTRACT
BACKGROUND: Chronic pain and access to care are identified as critical needs of the Veterans Health Administration. Music imagery and music listening interventions have shown promise as effective nonpharmacological options for pain management. However, most studies have focused on acute pain, passive music experiences, and in-person delivery. OBJECTIVE: In this study, we aimed to examine the feasibility and acceptability of 2 music interventions delivered through telehealth for chronic musculoskeletal pain, trial design, and theoretical model before conducting a fully powered efficacy or comparative effectiveness trial. METHODS: FAMILIA (Feasibility and Acceptability of Music Imagery and Listening Interventions for Analgesia) is a 3-arm, parallel group, pilot trial. A total of 60 veterans will be randomized to one of the three conditions: music imagery, music listening, or usual care. Aim 1 is to test the feasibility and acceptability of a multicomponent, interactive music imagery intervention (8-weekly, individual sessions) and a single-component, minimally interactive music learning intervention (independent music listening). Feasibility metrics related to recruitment, retention, engagement, and completion of the treatment protocol and questionnaires will be assessed. Up to 20 qualitative interviews will be conducted to assess veteran experiences with both interventions, including perceived benefits, acceptability, barriers, and facilitators. Interview transcripts will be coded and analyzed for emergent themes. Aim 2 is to explore the effects of music imagery and music listening versus usual care on pain and associated patient-centered outcomes. These outcomes and potential mediators will be explored through changes from baseline to follow-up assessments at 1, 3, and 4 months. Descriptive statistics will be used to describe outcomes; this pilot study is not powered to detect differences in outcomes. RESULTS: Recruitment for FAMILIA began in March 2022, and as of July 2022, 16 participants have been enrolled. We anticipate that enrollment will be completed by May 2023. We expect that music imagery and music listening will prove acceptable to veterans and that feasibility benchmarks will be reached. We hypothesize that music imagery and music listening will be more effective than usual care on pain and related outcomes. CONCLUSIONS: FAMILIA addresses four limitations in music intervention research for chronic pain: limited studies in veterans, evaluation of a multicomponent music intervention, methodological rigor, and internet-based delivery. Findings from FAMILIA will inform a fully powered trial to identify putative mechanisms and test efficacy. TRIAL REGISTRATION: ClinicalTrials.gov NCT05426941; https://tinyurl.com/3jdhx28u. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38788.
ABSTRACT
Background: Diagnosis and treatment of cancer and blood disorders in childhood, adolescence and young adulthood has a significant impact on patients and families. The Psychosocial Standards of Care project, initiated in 2012, resulted in 15 Psychosocial Standards (PSS) that guide the care patients and families receive throughout treatment. As members of the multidisciplinary psychosocial care team, music therapists play an important role in the advancing the PSS. Most surveys have focused on other commonly provided services (e.g., social work, child life), leaving gaps in our understanding about the availability and use of music therapy services to advance PSS. This paper offers an initial description of how music therapy services contribute to the provision of care under these Standards. Methods: We analyze how music therapy services promote PSS through synthesis of a music therapy clinical practice survey, published literature, and scope of practice documents. A brief overview of music therapy services structure, PSS that music therapy services currently address, and two clinical program descriptions are included. Results: Music therapy services address 9 of the 15 PSS and are well integrated within the larger program of psychosocial care. Findings suggest integration of music therapy services can help ensure personalized, comprehensive care and efficient use of often-limited psychosocial care resources. Discussion: Nurses, as members of the psychosocial and medical teams are uniquely positioned to identify patient and family care needs and refer patients for services. Understanding how music therapy services address PSS and most importantly, the needs of patients and families, will optimize their care.
Subject(s)
Hematologic Diseases , Music Therapy , Psychiatric Rehabilitation , Adolescent , Adult , Child , Family , Humans , Medical Oncology , Music Therapy/methods , Surveys and Questionnaires , Young AdultABSTRACT
BACKGROUND: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life. OBJECTIVE: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention. METHODS: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110). Parents were randomized to intervention or low-dose control; all AYAs received TMV. Data collection occurred at baseline, 2 weeks post intervention (T2), and 90 days post intervention (T3). RESULTS: There were no significant between-group differences on primary outcomes for parents or AYAs. We did find significant differences favoring the parent intervention group on parenting confidence at T2 and marginally better outcomes for family adaptability/cohesion at T3. Both groups exhibited significant within-group improvement for parent distress (state anxiety, T3; perceived stress, T2 and T3; mood, T3), state anxiety (T2) intervention only, and family strengths control group only. Qualitative data demonstrate the parent intervention raised self-awareness and parent confidence in the short term. CONCLUSION: Parents found their intervention helpful. Absence of significant results may be due to short intervention duration, need for tailored content, underpowered sample, and potential indirect parent benefit from AYA participation in TMV. The parent intervention did not provide an indirect benefit for AYAs. IMPLICATIONS FOR NURSING: Parents identified their own need for communication and support from nurses. Nurses can optimize AYA care by attending to parent needs through supportive listening and encouraging self-care.
Subject(s)
Neoplasms , Self Care , Adolescent , Child , Communication , Humans , Neoplasms/therapy , Parenting , Parents , Quality of Life , Young AdultABSTRACT
Background: A brief query was fielded to Veterans Health Administration (VHA) facilities across the United States to provide an initial assessment of recreation therapy (RT) and creative arts therapy (CAT) telehealth utilization. Methods: To develop an understanding of barriers and identify potential solutions for better delivery of services, a cross-sectional survey was deployed to points of contact at 136 VHA facilities. The survey included questions across five areas: staff, infrastructure, barriers to use, training, and interventions being deployed. Descriptive statistics were calculated, and a thematic analysis of qualitative responses was conducted. Results: The most frequent themes from aggregated responses indicated a need for hands-on training, reliable telehealth equipment, and accessible training and tools for Veteran patients who want to use telehealth services. Conclusion: Telehealth delivery of RT/CAT has increased services to Veteran patient populations; however, equipment and training are needed to expand consistent delivery to enhance patient reach across a national health care system.
Subject(s)
Hospital Administration , Telemedicine , Veterans , Cross-Sectional Studies , Humans , Recreation , United States , United States Department of Veterans AffairsABSTRACT
This paper reports the results of a single case design pilot study of a music therapy intervention [the Active Music Engagement (AME)] for young children (age 3.51 to 4.53 years) undergoing hematopoietic stem cell transplantation (HCST) and their caregivers. The primary aims of the study were to determine feasibility/acceptability of the AME intervention protocol and data collection in the context of HCST. Secondary aims were to examine caregivers' perceptions of the benefit of AME and whether there were changes in child and caregiver cortisol levels relative to the AME intervention. Results indicated that the AME could be implemented in this context and that data could be collected, though the collection of salivary cortisol may constitute an additional burden for families. Nevertheless, data that were collected suggest that families derive benefit from the AME, which underscores the need for devising innovative methods to understand the neurophysiological impacts of the AME.
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Music therapy clinicians bring an important perspective to the design and conduct of clinically meaningful studies. Unfortunately, there continue to be roadblocks that hinder clinician involvement in research and the development of successful partnerships between academic researchers and practicing clinicians. To help grow clinician involvement, it is important that research teams share their experiences. As such, the purpose of this qualitative study was to share music therapists' perspectives about their experience of working as a research clinician on a large multisite randomized controlled trial. 10 board-certified music therapists provided written responses to 6 data-generating questions about: (a) reasons for participating, (b) perceived challenges and benefits, (c) experiences of quality assurance monitoring, (d) professional growth, (e) value of research, and (f) advice for clinicians considering research involvement. Using thematic content analysis, we identified primary themes and subthemes for each question (20 themes; 30 subthemes). Qualitative analysis revealed not only common challenges, such as reconciling clinical and research responsibilities, but also benefits, including continued professional growth, greater understanding of research processes, and research participation as a way to advocate and advance the profession. Finally, for clinicians interested in becoming involved in research, therapists noted the importance of having workplace support from a mentor, supervisor, and/or administrator; seeking out available resources; and knowing roles and responsibilities before initiating research involvement. Findings offer important insight and recommendations to support the involvement of clinicians in research and support further exploration of clinician involvement in dissemination efforts to improve translation and uptake of research into practice.
Subject(s)
Music Therapy , Randomized Controlled Trials as Topic , Research Personnel , Certification , Female , Humans , Mentors , Music , Qualitative ResearchABSTRACT
Objective: Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. Design: The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type. Setting/Location: Pediatric inpatient HSCT unit. Subjects: Eligible participants are dyads of children 3-8 years old, hospitalized for HSCT, and their caregiver. Children with malignant and nonmalignant conditions will be eligible, regardless of transplant type. Intervention: AME intervention is delivered by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in, and independent use of, music play to manage the inter-related emotional distress experienced by children and their caregivers during HSCT. Dyads will receive two 45-min AME sessions each week during hospitalization. Outcome Measures: Eight collections of blood (child) and saliva (child/caregiver) will be performed for cortisol measurement. The authors will also collect self-report and caregiver proxy measures for dyad emotional distress, quality of life, and family function. At study conclusion, qualitative caregiver interviews will be conducted. Results: Planned analyses will be descriptive and evaluate the feasibility of participant recruitment, cortisol collection, planned evaluations, and AME delivery. Analysis of qualitative interviews will be used to gain an understanding about the ease/burden of biological sample collection and any perceived benefit of AME. Conclusions: Behavioral intervention studies examining biological mechanisms of action in pediatric transplant populations are rare. Findings will provide important information about the feasibility/acceptability of collecting cortisol samples during a high-intensity treatment and advance understanding about the use of active music interventions to mitigate child/caregiver distress during the transplant period.
Subject(s)
Caregivers/psychology , Hematopoietic Stem Cell Transplantation/psychology , Hydrocortisone/analysis , Music Therapy/methods , Stress, Psychological/therapy , Biomarkers/analysis , Child , Child, Preschool , Feasibility Studies , Humans , Pilot Projects , Research Design , Surveys and QuestionnairesABSTRACT
Music therapy is becoming a standard supportive care service in many pediatric hospitals across the United States. However, more detailed information is needed to advance our understanding about current clinical practice and increase availability of pediatric music therapy services. The purpose of this cross-sectional survey study was to collect and summarize data about music therapists working in pediatric medical settings. Specifically, we collected information about (1) therapist demographics, (2) organizational structure, (3) service delivery and clinical practice, and (4) administrative/supervisory responsibilities. Board-certified music therapists working in pediatric medical settings (n = 118) completed a 37-item online questionnaire. We analyzed survey data using descriptive statistics and content analysis. Findings indicated that there is a ratio of approximately one music therapist for every 100 patient beds, that one-third of respondents are the only music therapist in their setting, and that half of the surveyed positions are philanthropically funded. Prioritizing patient referrals based on acuity was common (95.7%, n = 110), with palliative care and pain as the most highly prioritized needs. More than half of respondents reported serving in high acuity areas such as the pediatric intensive care, hematology/oncology, or neonatal intensive care units. We recommend replication of this survey in five years to examine growth and change in service delivery among pediatric music therapists over time, with additional studies to (a) explore how therapist-to-patient ratios influence quality of care, (b) identify factors that contribute to sustainability of programs, and (c) determine how expansion of services support a broader population of patients and families.
Subject(s)
Music Therapy/organization & administration , Music , Palliative Care/methods , Pediatrics/instrumentation , Professional Practice , Certification , Child , Credentialing , Cross-Sectional Studies , Female , Humans , Pediatrics/methods , Surveys and Questionnaires , United StatesABSTRACT
CTSI Career Development Award (KL2) programs provide junior faculty with protected time and multidisciplinary, mentored research training in clinical and translational science research. The KL2 Visiting Scholars Program was developed to promote collaborative cross-CTSA training, leverage academic strengths at host CTSAs, and support the career development of participating scholars through experiential training and the development of new partnerships. This manuscript provides a detailed programmatic description and reports outcomes from post-visit and outcomes surveys. Since 2016, 12 scholars have completed the program, with 6 scheduled to complete it in 2021. Post-visit surveys (n = 12) indicate all scholars reported the program valuable to career development, 11 reported benefit for research development, and 11 expansion of collaborative networks. Outcomes surveys (n = 11) revealed subsequent scholar interaction with host institution faculty for 10 scholars, 2 collaborative grant submissions (1 funded), 2 planned grant submissions, 1 published collaborative manuscript, and 3 planned manuscript/abstract submissions. The Visiting Scholars Program is a cost- and time-efficient program that leverages the academic strengths of CTSAs. The program enhanced KL2 scholar training by expanding their professional portfolio, promoting research development, and expanding collaborative networks. Resources to support the program are shared in this report to expedite the development of similar programs at regional and national levels.
ABSTRACT
This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.
Subject(s)
Hematopoietic Stem Cell Transplantation/psychology , Music Therapy , Resilience, Psychological , Video Recording , Adaptation, Psychological , Adolescent , Anxiety/prevention & control , Child , Female , Hematopoietic Stem Cells , Humans , Male , Music , Narration , Neoplasms/therapy , Social Support , Stress, Psychological/prevention & control , Young AdultABSTRACT
Participation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial. Key themes included: Weighing the Pros and Cons; Randomization Preferences; Completing Measures; and Worthwhile Experience. The experiences of AYAs during RCTs can bring insights that inform the design and management of AYA trials. Strategies include improving assent/consent processes, design of electronic interfaces and encouraging researcher flexibility.