A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs

From qualitative work to intervention development in pediatric oncology palliative care research

Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers

Novice Nurses’ Experiences With Palliative and End-of-Life Communication

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses

Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer

INTRODUCTION: To provide an overview of factors related to recruitment of adolescents and young adults (AYA) into research and recruitment rates and reasons for refusal from a multicenter study entitled "Stories and Music for Adolescent/Young Adult Resilience during Transplant" (SMART). METHODS: A randomized clinical trial study design was used. The settings included 9 hospitals. The sample included AYAs (aged 11-24 years) who were undergoing a stem cell transplant. Several instruments were used to measure symptom distress, coping, resilience, and quality of life in AYA with cancer. RESULTS: A total of 113 AYA were recruited (50%) for this study. Strategies were refined as the study continued to address challenges related to recruitment. We provide a description of recruitment strategies and an evaluation of our planning, implementing, and monitoring of recruitment rates for the SMART study. DISCUSSION: When designing a study, careful consideration must be given to factors influencing recruitment as well as special considerations for unique populations. Dissemination of strategies specific to unique populations will be helpful to the design of future research studies

Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer

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

Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: a report from the Children's Oncology Group

BACKGROUND: To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: 1) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; 2) decrease risk factors of illness-related distress and defensive coping; and 3) increase outcomes of self-transcendence and resilience. METHODS: This was a multisite randomized, controlled trial (COG-ANUR0631) conducted at 8 Children's Oncology Group sites involving 113 AYAs aged 11-24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase's Resilience in Illness Model (RIM). Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning, and resilience at baseline (T1), postintervention (T2), and 100 days posttransplant (T3). RESULTS: At T2, the TMV group reported significantly better courageous coping (Effect Size [ES], 0.505; P = .030). At T3, the TMV group reported significantly better social integration (ES, 0.543; P = .028) and family environment (ES, 0.663; P = .008), as well as moderate nonsignificant effect sizes for spiritual perspective (ES, 0.450; P = .071) and self-transcendence (ES, 0.424; P = .088). CONCLUSIONS: The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high-risk cancer treatment. We recommend the TMV be examined in a broader population of AYAs with high-risk cancers

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs

Novice Nurses’ Experiences With Palliative and End-of-Life Communication

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses

COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and subsequently improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction)