Interprofessional spiritual care education in pediatric hematology-oncology: A pilot study.

BACKGROUND: Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians' capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology. A model of interprofessional spiritual care entails that all team members attend to patients' spirituality by employing generalist spiritual care skills and collaborating with spiritual care specialists such as chaplains. METHODS: Interdisciplinary team members providing care for AYA with cancer and blood disorders were recruited to participate in interprofessional spiritual care education. Our intervention combined an evidence-based online curriculum and in-person discussion groups. Pretest-posttest study examined changes in participants' skills and practices to identify, address, and discuss spiritual concerns. Surveys were conducted at baseline and at 1, 3, and 6 months after the intervention. RESULTS: Participants (n = 21) included physicians, advanced practice providers, nurse coordinators, and psychosocial team members. We observed positive changes in participants' ability (36%, P < 0.01), frequency (56%, P = 0.01), confidence (32%, P < 0.01), and comfort (31%, P = 0.02) providing generalist spiritual care baseline versus one month, with significant gains maintained through six months (Omnibus P < 0.05). CONCLUSIONS: Utilizing ISPEC, interprofessional spiritual care education has a strong potential to develop pediatric hematology-oncology team members' capabilities to attend to the spiritual aspect of whole-person care and thus contribute to the well-being of AYA with cancer and blood disorders.

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 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).

Predictors of resilience among adolescent disaster survivors: A path analysis.

AIMS: To investigate a theoretical model of risk and protective factors to predict resilience among adolescent disaster survivors. DESIGN: A cross-sectional study. METHODS: Parent's consent and student's informed consent forms were distributed at seven schools in a postdisaster setting (Yogyakarta, Indonesia) between July-October 2017; those who agreed to participate had to complete the self-reported questionnaires. Demographic data were evaluated using descriptive statistical analyses and relationships among study variables were determined using a path analysis. RESULTS: Results of the model test analysis indicated that six of the seven the hypothesized paths were supported by data from our samples and demonstrated significance on the path coefficients (p < .01). One path coefficient on the association between posttraumatic stress disorder (PTSD) symptoms and resilience was found to be insignificant (ß = -0.002, p > .05). However, overall, our hypothesized model was retained, indicating empirical support and adequate model's fit indices for the theoretical model. CONCLUSIONS: Overall, the findings demonstrated the predictive roles of risk and protective factors in adolescent disaster survivors' resilience. IMPACT: Resilience is known to be an important concept in recovering from long-term impacts following a disaster in adolescent populations, but its risk and protective factors have not been adequately explored. We found that PTSD symptoms influenced how adolescent disaster survivors developed defensive coping, social support had an indirect effect on resilience through courageous coping and defensive coping acted as a mediator between PTSD symptoms and courageous coping. These findings can help mental health professionals (i.e., community mental health nurses) promote intervention strategies to enhance resilience through improving coping skills in adolescent populations exposed to a disaster.

Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste".

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer.

Pilot Randomized Trial of Active Music Engagement Intervention Parent Delivery for Young Children With Cancer.

Objectives: To examine the feasibility/acceptability of a parent-delivered Active Music Engagement (AME + P) intervention for young children with cancer and their parents. Secondary aim to explore changes in AME + P child emotional distress (facial affect) and parent emotional distress (mood; traumatic stress symptoms) relative to controls. Methods: A pilot two-group randomized trial was conducted with parents/children (ages 3-8 years) receiving AME + P ( n = 9) or attention control ( n = 7). Feasibility of parent delivery was assessed using a delivery checklist and child engagement; acceptability through parent interviews; preliminary outcomes at baseline, postintervention, 30 days postintervention. Results: Parent delivery was feasible, as they successfully delivered AME activities, but interviews indicated parent delivery was not acceptable to parents. Emotional distress was lower for AME + P children, but parents derived no benefit. Conclusions: Despite child benefit, findings do not support parent delivery of AME + P.

Satisfaction With a Family-Focused Intervention for Mild Cognitive Impairment Dyads.

PURPOSE: This article describes satisfaction that persons with mild cognitive impairment (PwMCI) and their caregivers had with the Daily Enhancement of Meaningful Activity (DEMA) intervention. METHODS: This randomized controlled pilot study compared satisfaction (usefulness, ease of use, and acceptability) with DEMA (n = 17 dyads) to an information support (IS) control group (n = 19 dyads). Six biweekly sessions (two in person and four by telephone) were delivered by trained nurses. Data analysis included descriptive statistics, independent-sample t tests, and content analysis. FINDINGS: PwMCI receiving DEMA rated their satisfaction significantly higher (p = .033) than did the control group; there was no difference in satisfaction between caregivers across groups. Qualitative interview data supported the usefulness, ease of use, and acceptability of DEMA for both PwMCI and caregivers. CONCLUSIONS: Results documented PwMCI's satisfaction with DEMA as implemented by nurses to support PwMCI-caregiver dyads' engagement in meaningful activity. DEMA may need revision to increase satisfaction for caregivers. CLINICAL RELEVANCE: The DEMA intervention was evaluated as useful, easy to use, and acceptable to PwMCI and their caregivers based on positive mean ratings. The study findings provide preliminary support of DEMA as a means to improve quality of life by helping to support patient and caregiver engagement in meaningful activities and problem solving.

Feasibility and Effect Sizes of the Revised Daily Engagement of Meaningful Activities Intervention for Individuals With Mild Cognitive Impairment and Their Caregivers.

A nurse-led intervention, Daily Engagement of Meaningful Activities (DEMA), was evaluated for feasibility and effect sizes in a two-group randomized pilot study with 36 patient-caregiver dyads (17 DEMA and 19 attention control). Effect sizes were estimated on 10 outcomes: dyad functional ability awareness congruence; patients' meaningful activity performance and satisfaction, confidence, depressive symptoms, communication satisfaction, physical function, and life satisfaction; and caregivers' depressive symptoms and life changes. High feasibility of DEMA was supported by the following indicators: consent (97.7%), session completion (91.7%), and Time 3 measure completion (97.2%). Compared to the attention control group, the DEMA group had higher dyad congruence in functional ability awareness and life satisfaction 3 months post-intervention and improved physical function at 2 weeks post-intervention. Although DEMA showed high feasibility and benefits on some health-related outcomes, further testing of DEMA in a larger randomized controlled clinical trial is needed.

Comparison of younger and older breast cancer survivors and age-matched controls on specific and overall quality of life domains.

BACKGROUND: Younger survivors (YS) of breast cancer often report more survivorship symptoms such as fatigue, depression, sexual difficulty, and cognitive problems than older survivors (OS). This study sought to determine the effect of breast cancer and age at diagnosis on quality of life (QoL) by comparing 3 groups: 1) YS diagnosed at age 45 years or before, 2) OS diagnosed between 55 and 70, and 3) for the YSs, age-matched controls (AC) of women not diagnosed with breast cancer. METHODS: Using a large Eastern Cooperative Oncology Group (ECOG) database, 505 YS were recruited who were aged 45 years or younger when diagnosed and 622 OS diagnosed at 55 to 70 years of age. YS, OS, and AC were compared on physical, psychological, social, spiritual, and overall QoL variables. RESULTS: Compared to both AC and to OS, YS reported more depressive symptoms (P = .005) and fatigue (P < .001), poorer self-reported attention function (P < .001), and poorer sexual function (P < .001) than either comparison group. However, YS also reported a greater sense of personal growth (P < .001) and perceived less social constraint (P < .001) from their partner than AC. CONCLUSIONS: YS reported worse functioning than AC relative to depression, fatigue, attention, sexual function, and spirituality. Perhaps even more important, YS fared worse than both AC and OS on body image, anxiety, sleep, marital satisfaction, and fear of recurrence, indicating that YS are at greater risk for long-term QoL problems than survivors diagnosed at a later age.

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.

Perceptions of communication, family adaptability and cohesion: a comparison of adolescents newly diagnosed with cancer and their parents.

PURPOSE: To describe and compare adolescent and parent perspectives on communication, family adaptability and cohesion, as well as relationships among these variables, during the first month of an adolescent's cancer diagnosis. METHODS: Seventy adolescent-parent dyads were enrolled as part of a larger multi-site study. The adolescents ranged in age from 11 to 19, and 61% were males. Parents were predominately mothers (83%). Dyads were predominately non-Hispanic Caucasian (63%). Measures included the Parent-Adolescent Communication Scale and the Family Adaptability and Cohesion Evaluation Scale (FACES II). Paired t-tests, Pearson correlations, intra-class correlation coefficients and multiple linear regression analyses were completed. RESULTS: Adolescent scores on communication, family adaptability and cohesion were significantly lower than parent scores. The inter-dyadic agreement between adolescents and parents was low. Communication, family adaptability and cohesion were examined separately for adolescents and for parents, and significant relationships were found. Both adolescent- and parent-perceived communication was significantly associated with family adaptability and cohesion outcomes. CONCLUSIONS: Differences were found in adolescent and parent perceptions of communication, family adaptability and cohesion. When both adolescents and parents had better perceived communication, this was associated with better perceived family adaptability and cohesion. Results suggest that the development of interventions to enhance adolescent-parent communication could help foster better family adaptability and cohesion, which may ultimately impact their psychological adjustment. In addition, understanding the degree to which adolescents and parents disagree on their perceptions, including the results that parents generally have more favorable perceptions, may be a useful starting point when developing interventions.

Pilot testing a couples-focused intervention for mild cognitive impairment.

The purpose of this pilot was to evaluate the acceptability, feasibility, and potential benefits of the multicomponent, Daily Enhancement of Meaningful Activity (DEMA) intervention, which was tailored to help couples facing mild cognitive impairment (MCI) work together to meet goals, remain engaged in meaningful activities, and adapt to changes over time. Using a single-group design, 10 individuals with MCI and their family caregivers were recruited to participate in the DEMA intervention over 6 biweekly sessions. Data were collected pre-and at 1 week and 3 months postintervention completion rates indicated the program and study procedures were well accepted. Qualitative and quantitative finding indicated positive trends in meaningful activity performance and maintenance of health-related outcomes, as well as high program satisfaction. The DEMA intervention is potentially promising but needs further testing in a randomized clinical trial.

The Concept of Double Protection in the Childhood Cancer Context.

BACKGROUND: The concept of double protection is used to describe communication avoidance used by parents and their child or adolescents with cancer in attempts to protect the other against disease-related stress and emotions, resulting from communication about the cancer, its treatment, and thoughts. This concept has received limited attention in the research literature. OBJECTIVES: The aims of this concept analysis are to (1) explore its defining characteristics, applicability, and utility, (2) spotlight the concept and increase awareness and interest among healthcare providers and researchers, and (3) provide a direction for future interventions to improve parent-child communication in the childhood cancer context. METHODS: Rodgers' Evolutionary Concept Analysis was used, and the findings from a study that explored the communication experience of Korean adolescents with cancer and their parents were integrated. RESULTS: This study explored the attributes, antecedents, consequences, and related terms. The following attributes were extracted: intention to protect, bidirectional, and absence of parent-child communication at a deeper level. CONCLUSION: Clarification of the concept of double protection provides insight into the concept as a barrier to engagement in parent-child communication and supports the significance of double protection in the childhood cancer context. IMPLICATIONS FOR PRACTICE: There is a need for increased awareness of the challenges and dangers inherent in family communication avoidance, double protection. In order to address the issue, developing developmentally appropriate and valid clinical assessment tool and interventions are required. More research on the evidence-based benefits of effective parent-child communication is also required.

Understanding Processes, Outcomes, and Contexts in Medication Adherence: The Medication Adherence Context and Outcomes (MACO) Framework.

Poor medication adherence is a significant problem, yet interventions to improve it have been largely ineffective. Existing ecological models indicate that adherence is multi-dimensional; however, they do not reflect understanding of context-specific processes and how they lead to adherence outcomes. A framework that reflects context-specific processes is important because it could be used to inform context-specific intervention delivery and measure associated adherence outcomes. The purpose of this paper is to describe the Medication Adherence Context and Outcomes (MACO) framework, which includes contexts (ie, clinics, pharmacies, and home) and context-specific processes (ie, shared decision-making, prescription filling strategies, home medication management) that lead to adherence outcomes (initiation, implementation, discontinuation, and persistence). The Medication and Adherence Contexts and Outcomes (MACO) framework was iteratively developed between 2015 and 2018 based on theory, practice, and research and combining patient experience journey mapping to chronologically describe the environmental contexts and actions (processes) that occur within the contexts and how they contribute to medication adherence as outcome. The three distinct yet interrelated contexts described in the MACO framework are 1) clinical encounters, 2) pharmacy encounters, and 3) day-to-day home management. Within these contexts are specific medication management actions that occur (processes) in order to produce adherence-related outcomes (initiation, implementation, and discontinuation/persistence). The MACO framework distinguishes context-specific processes and outcomes. The MACO framework may be useful to understand at which point(s) along the continuum people experience problems with managing medications. This understanding is potentially useful for developing and delivering context-specific interventions that are based on processes that underlie nonadherence and selecting adherence measures appropriate for the contexts.

Connectedness in the context of patient-provider relationships: a concept analysis.

AIM: This paper is a report of an analysis of the concept of connectedness. BACKGROUND: Previous attempts to conceptualize patient-provider relationships were limited in explaining how such relationships are fostered and maintained, and how they influence patient outcomes. Connectedness is a concept that may provide insights into the advantages of patient-provider relationships; however, the usefulness of this concept in health care is limited by its conceptual ambiguity. Although connectedness is widely used to describe other social relationships, little consistency exists among its definitions and measures. DATA SOURCES: Sources identified through CINAHL, OVID, PubMed and PsychINFO databases and references lists of selected articles between 1983 and 2010. REVIEW METHODS: A hybrid concept analysis approach was used, involving a combination of traditional concept analysis strategies that included: describing historical conceptualizations, identifying attributes, critiquing existing definitions, examining boundaries and identifying antecedents and consequences. RESULTS: Using five distinct historical perspectives, seven attributes of connectedness were identified: intimacy, sense of belonging, caring, empathy, respect, trust and reciprocity. A broad definition of connectedness, which can be used in the context of patient-provider relationships, was developed. A preliminary theoretical framework of connectedness was derived from the identified antecedents, attributes and consequences. CONCLUSION: Research efforts to advance the concept of connectedness in patient-provider relationships have been hampered by a lack of conceptual clarity. This concept analysis offers a clearer understanding of connectedness, provides recommendations for future research and suggests practice implications.

Triangulation approach to developing, evaluating, and applying the evolving theory of adolescent acceptance of asthma.

Acceptance is a term used by healthcare professionals regarding patients' psychosocial adjustment to chronic conditions. This paper describes a triangulation approach, applied over 25 years, to develop and evaluate a theory of adolescent acceptance of asthma. The theory was used to guide the development and evaluation of an education and counseling program focused on fostering acceptance. The approach was effective in (a) defining acceptance and isolating its attributes; (b) identifying its antecedents and consequences, and specifying relationships among them; (c) revealing overlooked variables and augmenting theory; and (d) using theory to guide development and evaluation of the self-management program.

Randomized Clinical Trial of a Self-care and Communication Intervention for Parents of Adolescent/Young Adults Undergoing High-Risk Cancer Treatment: A Report From the Children's Oncology Group.

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.

Ensuring treatment fidelity in a multi-site behavioral intervention study: implementing NIH Behavior Change Consortium recommendations in the SMART trial.

The Stories and Music for Adolescent/Young Adult Resilience during Transplant (SMART) study (R01NR008583; U10CA098543; U10CA095861) is an ongoing multi-site Children's Oncology Group randomized clinical trial testing the efficacy of a therapeutic music video intervention for adolescents/young adults (11-24 years of age) with cancer undergoing stem cell transplant. Treatment fidelity strategies from our trial are consistent with the National Institutes of Health (NIH) Behavior Change Consortium Treatment Fidelity Workgroup (BCC) recommendations and provide a successful working model for treatment fidelity implementation in a large, multi-site behavioral intervention study. In this paper, we summarize 20 specific treatment fidelity strategies used in the SMART trial and how these strategies correspond with NIH BCC recommendations in five specific areas: (1) study design, (2) training providers, (3) delivery of treatment, (4) receipt of treatment, and (5) enactment of treatment skills. Increased use and reporting of treatment fidelity procedures is essential in advancing the reliability and validity of behavioral intervention research. The SMART trial provides a strong model for the application of fidelity strategies to improve scientific findings and addresses the absence of published literature, illustrating the application of BCC recommendations in behavioral intervention studies.

Principles and strategies for monitoring data collection integrity in a multi-site randomized clinical trial of a behavioral intervention.

Although treatment fidelity strategies for enhancing the integrity of behavioral interventions have been well described, little has been written about monitoring data collection integrity. This article describes the principles and strategies developed to monitor data collection integrity of the "Stories and Music for Adolescent/Young Adult Resilience During Transplant" study (R01NR008583, U10CA098543, and U10CA095861)-a multi-site Children's Oncology Group randomized clinical trial of a music therapy intervention for adolescents and young adults undergoing stem cell transplant. The principles and strategies outlined in this article provide one model for development and evaluation of a data collection integrity monitoring plan for behavioral interventions that may be adapted by investigators and may be useful to funding agencies and grant application reviewers in evaluating proposals.

Development and use of a web-based data management system for a randomized clinical trial of adolescents and young adults.

Recent advances in technology provide support for multisite, Web-based data-entry systems and the storage of data in a centralized location, resulting in immediate access to data for investigators, reduced participant burden and human entry error, and improved integrity of clinical trial data. The purpose of this article was to describe the development of a comprehensive, Web-based data management system for a multisite randomized behavioral intervention trial. Strategies used to create this study-specific data management system included interdisciplinary collaboration, design mapping, feasibility assessments, and input from an advisory board of former patients with characteristics similar to the targeted population. The resulting data management system and development strategies provide a template for other behavioral intervention studies.

Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China.

BACKGROUND: Understanding parents' experiences is a prerequisite to developing interventions that are sensitive to needs of children and families. In China, little is known about parental experiences of having a young child with acute lymphoblastic leukemia (ALL). This phenomenological study aimed to describe parental experiences of having a young child with ALL in China. METHOD: Ten parents, recruited in central China using purposive sampling, participated in face-to-face, in-depth interviews using Haase's adaptation of Colaizzi's phenomenological method. RESULTS: Five theme categories were identified: (a) The Cancer Diagnosis as a Terrible Disaster-The Sky is Falling, (b) Fighting the Beast, (c) Putting on a Happy Face and Other Coping Strategies, (d) Diagnosis Disclosure: If We Tell and How to Tell, and (e) Hope-Filled Expectations: Returning to Normal Life. CONCLUSION: Parents put their child's health as their top priority. They strive to manage uncertainty about prognosis and cope with enormous pressures caused by children's suffering, financial burden, and stigma. Parents also express their resilience and hope throughout their child's cancer journey. Support services to strengthen specific families' protective factors (i.e., family/community support, hope, and positive coping) are needed to foster resilience and quality of life. Health care professionals should systematically assess parents' needs, provide validated education materials, and implement tailored interventions across the cancer continuum. Public education and advocacy about cancer is also necessary to decrease cancer-related stigma, and provide financial aid and health care resources in pediatric oncology.