Cynthia J. Bell

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

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.

Palliative Care as a Standard of Care in Pediatric Oncology.

The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision‐making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members. Pediatr Blood Cancer

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYAs quality of life as end of life nears.

Parental Perceptions of Care of Children at End of Life

Objective: Little is known regarding the perceptions of parents about end-of-life care for their children. This study describes parental perceptions of the care of hospitalized, terminally ill children in the areas of (1) clinical management, (2) interdisciplinary support, and (3) pain and symptom management. Methods: Through a mixed methods design, researchers interviewed a representative sampling of bereaved parents via telephone. Results: Data provided evidence of areas which lack satisfaction with elements of end-of-life care of hospitalized children. Conclusion: Parental satisfaction with their child’s care during end of life indicates need for improvement in pain management, communication, and parental involvement in decision making. While education cannot guarantee desired changes in attitudes or behaviors, it may provide the essential foundation of knowledge, skills, and ethical understanding needed by professional providers.

Development and psychometric testing of a breast cancer survivor self-efficacy scale.

PURPOSE/OBJECTIVES To describe the development of a self-efficacy instrument that measures perceived ability to manage symptoms and quality-of-life problems resulting from the diagnosis and treatment of breast cancer. DESIGN Items were developed and content validity assessed. A 14-item scale was psychometrically evaluated using internal consistency reliability and several types of construct validity. SAMPLE 1,127 female breast cancer survivors (BCSs). METHODS Written consents were mailed to the research office. Data were collected via mail and telephone. MAIN RESEARCH VARIABLES Demographics, symptom bother, communication with healthcare provider, attention function, fear of recurrence, depression, marital satisfaction, fatigue, sexual functioning, trait and state anxiety, and overall well-being. FINDINGS Data demonstrated that the breast cancer self-efficacy scale (BCSES) was reliable, with an alpha coefficient of 0.89, inter-item correlations ranging from 0.3-0.6, and item-total correlation coefficients ranging from 0.5-0.73. Three of 14 items were deleted because of redundancy as identified through high (> 0.7) inter-item correlations. Factor analysis revealed that the scale was unidimensional. Predictive validity was supported through testing associations between self-efficacy and theoretically supported quality-of-life variables, including physical, psychological, and social dimensions, as well as overall well-being. CONCLUSIONS The BCSES demonstrated high internal consistency reliability, unidimensionality, and excellent content and construct validity. This scale should be integrated into interventions that target self-efficacy for managing symptoms in BCSs. IMPLICATIONS FOR NURSING Nurses working with BCSs may use this tool to assess areas in which survivors might need to build confidence to adequately cope with their specific survivorship concerns. KNOWLEDGE TRANSLATION The use of the BCSES can inform nurse researchers about the impact of an intervention on self-efficacy in the context of breast cancer survivorship, improving the ability to deliver effective interventions. The scale is brief and easy to administer. Results of this study demonstrate clear psychometric reliability and validity, suggesting that the BCSES should be put to use immediately in interventions targeting the quality of life of BCSs.

Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers

The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement. Data analysis reveals significant variability when comparing respondents from professional roles and practice environments. Despite progress in PPC availability, care delivery remains incongruent with current recommendations. Knowledge gained from this study emphasizes the important role for all health care providers in advocating for support of PPC programs, educating the public, and committing to intentional involvement of PPC services while caring for pediatric oncology patients.

Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions.

Background: Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about how adolescents become ready for such discussions. Objective: The purpose of this study was to explore the process of adolescent readiness for end-of-life preparedness discussions, generating a theoretical understanding for guiding clinical conversations when curative options are limited. Methods: We explored 2 in-depth cases across time using case-study methodology. An à priori conceptual model based on current end-of-life research guided data collection and analysis. Multiple sources including in-depth adolescent interviews generated data collection on model constructs. Analysis followed a logical sequence establishing a chain of evidence linking raw data to study conclusions. Synthesis and data triangulation across cases and time led to theoretical generalizations. Initially, we proposed a linear process of readiness with 3 domains: a cognitive domain (awareness), an emotional domain (acceptance), and a behavioral domain (willingness), which preceded preparedness. Results: Findings led to conceptual model refinement showing readiness is a dynamic internal process that interacts with preparedness. Current awareness context facilitates the type of preparedness discussions (cognitive or emotional). Furthermore, social constraint inhibits discussions. Conclusions: Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation. Implications for Practice: Understanding the dynamic process of readiness for engaging in end-of-life preparedness provides clinician insight for guiding discussions that facilitate shared decision making and promote quality of life for adolescents and their families.

Palliative nursing care for children and adolescents with cancer

Correspondence: Terrah L Foster Vanderbilt University School of Nursing, 461 21st Avenue South, 409 Godchaux Hall, Nashville, TN 37240, USA Tel +1 615 343 6025 Fax +1 615 343 5898 Email terrah.l.foster@vanderbilt.edu Abstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children’s understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.