Health-Care Professionals Perceived Barriers to Effective Cancer Pain Management in the Home Hospice Setting: Is Dying at Home Really Best?

Hospice health-care professionals (HCP) evaluate and manage cancer pain in patient homes. This study explores HCP's perceptions of barriers that affect pain management for home hospice cancer patients. A convenience sample of 20 experienced hospice HCP were recruited from a regional hospice agency. Data were collected through two focus groups using semistructured interviews and analyzed using a constant comparative approach to generate themes. An unexpected finding revealed patient's religious and cultural beliefs about suffering and family caregiver's beliefs that patients deserve to suffer due to past actions are barriers to pain management in home hospice. Hospice HCP can identify patients at risk for suffering at the end of life. Interventions targeting spiritual suffering and needs are needed. Home hospice HCP have an ethical obligation to address undue suffering through family's withholding of necessary pain medications and should consider alternative placement when home is not suitable for a peaceful death.

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.

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer.

BACKGROUND: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians. OBJECTIVE: This study describes the development and validation of an instrument that measures AYA readiness to engage in PCEOL clinical conversations. METHODS: A Ready-to-Talk Measure (R-T-M) was developed, guided by the revised conceptual model of readiness across 3 domains (awareness, acceptance, and willingness). Content experts evaluated validity, and 13 AYAs with advanced cancer participated in cognitive interviews. Acceptability (item applicability, clarity, interpretation, sensitivity, missingness) and experiences (benefit, burden) were analyzed. RESULTS: The scale content validity index was ≥0.90 for each domain. Forty-two of the 55 R-T-M items were acceptable without any change. Three items were deleted. Ten items were modified, and 3 were added. Adolescents and young adults wanted more items about friends/siblings and about AYA unique qualities for clinicians to know them better. Adolescents and young adults acknowledged benefit through talking about difficult, relevant topics. CONCLUSION: Ready-to-Talk Measure validity was strengthened by deleting or modifying unclear or misinterpreted items and by adding items. Next steps include psychometric analysis to determine reliability/dimensionality and stakeholder input to make the R-T-M a clinically useful tool. IMPLICATIONS FOR PRACTICE: Ready-to-Talk Measure assessment of readiness to engage in PCEOL conversations while identifying unique preferences of AYAs holds promise for facilitating ongoing discussions.

Providing Palliative and Hospice Care to Children, Adolescents and Young Adults with Cancer.

OBJECTIVES: To describe palliative, concurrent, and hospice care in pediatric oncology in the United States (US), we present a clinical scenario illustrating palliative and hospice care, including eligibility for concurrent care, insurance coverage and billing, barriers to accessing quality pediatric palliative and hospice care, and implications for oncology nursing practice. DATA SOURCES: Peer-reviewed articles, clinical practice guidelines, professional organizations, and expert clinical opinion examining pediatric oncology, palliative care, and hospice care. CONCLUSION: Understanding the goals of palliative and hospice care and the differences between them is important in providing holistic, goal-directed care. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses play a pivotal role in supporting the goals of pediatric palliative care and hospice care and in educating patients and their families. Nurses form trusting relationships with pediatric oncology patients and their families and are in a position to advocate for best palliative care practices as disease progresses to end of life, including when appropriate concurrent care or hospice.

End-of-life experiences in adolescents dying with cancer.

PURPOSE: This study explores the experiences of individuals in early, middle, and late adolescence dying from cancer. Place of death, medications used at end of life (EOL), and discussions prior to death are examined. METHODS: Data were obtained from a retrospective review of medical charts from 103 adolescents who died of cancer between 2000 and 2005. RESULTS: Adolescents with leukemia/lymphoma were relatively more likely to die in an intensive care unit (p = 0.028) where cause of death was more likely to be treatment-related (p < 0.001), and EOL discussions more likely to occur in the last 7 days of life (p = 0.002). Anxiolytic use was significantly higher during late adolescence (p = 0.037). CONCLUSIONS: Adolescents have unique developmental needs that should be considered at EOL. Timing of EOL discussions occurred very close to death for a significant number of adolescents, allowing very little time to psychologically prepare for death.

Exposing the Risks of Social Media Recruitment in Adolescents and Young Adults with Cancer: #Beware.

Enrolling adolescents and young adults (AYAs) in psychosocial research studies during cancer treatment is challenging. Successful AYA study recruitment not specific to oncology patients supports social media network advertising and recruitment strategies. However, this brief report describes several challenges to recruiting an appropriate and credible anonymous sample while conducting Institutional Review Board-approved research using social media recruitment. Namely, ethical oversight impeded access to AYAs with cancer and monetary remuneration allured many noneligible AYA participants who accessed the online survey. Lessons learned from this study provide caution for researchers interested in a similar approach and illustrate ways to determine credibility of findings.

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.

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.

Measuring Development of Adolescent and Young Adult Cancer Patients: An Integrative Review of Available Instruments.

Adolescents and young adults (AYAs) 15-39 years old face unique challenges during cancer treatment as developmental and social needs are often disrupted to achieve cure. Developmentally appropriate supportive care for AYAs across the cancer trajectory is needed. The purpose of this review is to identify and describe instruments that measure AYA development across physical, psychological, and social domains, commenting on the instruments' psychometric properties and usefulness in clinical practice and research. A computerized literature search published in English from 1950 to January of 2017 was conducted utilizing the following databases: Mental Measurements Yearbook (MMY), Health and Psychosocial Instruments, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and Google Scholar. The following instruments were identified and described: the Child Health and Illness Profile-Adolescent Edition (CHIP-AE); the Course of Life Questionnaire; the Developmental Task Questionnaire (DTQ); the Impact of Cancer scale for childhood survivors and AYAs (IOC-CS and IOC-AYA); the McCleery Scale of Adolescent Development (MSAD); and the Minneapolis-Manchester Quality of Life Adolescent and Young Adult Form (MMQL-AF and MMQL-YA). Among currently available instruments, the IOC-AYA and MMQL-AF were relevant to AYAs undergoing or completing cancer therapy. However, validation for the IOC-AYA occurred in cancer survivors off treatment so further psychometric evaluation is needed in AYAs currently undergoing cancer treatment. Furthermore, the MMQL-AF has been validated for use during active cancer treatment, but is limited to adolescents 13-20 years. Further research may be needed to create or refine instruments measuring the developmental impact in AYAs, particularly emerging adults undergoing active cancer treatment.

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.

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 AYA's 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.

Predicting fear of breast cancer recurrence and self-efficacy in survivors by age at diagnosis.

PURPOSE/OBJECTIVES: To determine the effect that age at diagnosis has on fear of breast cancer recurrence and to identify the predictors of fear of recurrence using self-efficacy as a mediator. DESIGN: Cross-sectional survey. SETTING: Two university cancer centers and one cooperative group in the midwestern United States. SAMPLE: 1,128 long-term survivors. METHODS: Survivors were eligible if they were aged 18-45 years (younger group) or 55-70 years (older group) at cancer diagnosis, had received chemotherapy, and were three to eight years postdiagnosis. Fear of recurrence was compared between younger and older groups. Multiple regression analyses were used to test variables' prediction of fear of recurrence and breast cancer survivor self-efficacy, as well as breast cancer survivor self-efficacy mediation effects. MAIN RESEARCH VARIABLES: Fear of recurrence, breast cancer survivor self-efficacy, and age at diagnosis. FINDINGS: Survivors diagnosed at a younger age had significantly higher fear of recurrence, as well as health, role, womanhood, death, and parenting worries. Perceived risk of recurrence, trait anxiety, and breast cancer reminders explained significant variance in fear of recurrence and breast cancer survivor self-efficacy. Breast cancer survivor self-efficacy partially mediated the effects of variables on fear of recurrence. CONCLUSIONS: The findings suggest that breast cancer survivor self-efficacy may have a protective effect for survivors who are younger at diagnosis and have higher perceived risk of recurrence, higher trait anxiety, and more breast cancer reminders. Oncology nurses already use the skills required to support self-efficacy. Additional research is needed to define and test breast cancer survivor self-efficacy interventions. IMPLICATIONS FOR NURSING: Oncology nurses are in a key role to assess fear of recurrence and provide self-efficacy interventions to reduce it in breast cancer survivors. Strategies to efficiently address fear of recurrence to reduce psychological distress in survivorship follow-up care are warranted.

Uncertainty in adolescents and young adults with cancer.

PURPOSE/OBJECTIVES: To describe uncertainty in three groups of adolescents and young adults with cancer at specific times in their cancer experience: newly diagnosed, diagnosed one to four years, and diagnosed five or more years. DESIGN: Descriptive, cross-sectional, comparative. SETTING: Six pediatric oncology centers in North America. SAMPLE: 193 adolescents and young adult cancer survivors aged 11-22 years, able to read English, with no central nervous system disease. METHODS: A booklet of questionnaires was completed during a clinic visit or hospitalization. Uncertainty was measured using Mishel's Uncertainty in Illness Scale. MAIN RESEARCH VARIABLES: Uncertainty and time since diagnosis. FINDINGS: No significant differences were found in the overall level of uncertainty among the three time-since-diagnosis groups; however, analysis of variance on individual items detected significant group differences for 8 of the 33 items. Newly diagnosed survivors had significantly higher uncertainty for future pain, the unpredictable illness course, staff responsibilities, and concerns about when they would be able to care for themselves. Survivors five or more years from diagnosis had significantly higher uncertainty related to knowing what was wrong, and they had more unanswered questions and higher uncertainty compared to the two other groups about the probability of successful treatment. All of the survivors had high uncertainty about the multiple meanings of communication from doctors. CONCLUSIONS: The overall level of uncertainty remained unchanged across the survivorship continuum, but differences existed in specific concerns. IMPLICATIONS FOR NURSING: Uncertainty is important to consider far beyond the treatment period, particularly assessment of information needs and acknowledgment of inherent uncertainty throughout cancer survivorship.