RESUMO
Researchers use patient-reported outcomes (PRO) to capture the patient experience, and in pediatrics, parent report of symptom and function often accompanies the child's assessment. Children with cancer and their family caregivers frequently evaluate symptom burden and functional status differently. Child-caregiver PRO disagreement often worries pediatric oncology clinicians, who do not know how to best approach sharing it with families. Openly discussing differences in symptom and functional status reporting is a crucial element of supporting families and can improve family harmony throughout the child's illness journey. This paper offers strategies and language for communicating with families about PRO disagreement.
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Cuidadores , Neoplasias , Criança , Humanos , Medidas de Resultados Relatados pelo PacienteRESUMO
BACKGROUND: Chimeric antigen receptor (CAR) T-cell therapy provides promising outcomes in relapsed/refractory B acute lymphoblastic leukemia (ALL), yet still carries high toxicity rates and relatively poor long-term survival. Efficacy has yet to be demonstrated in other diagnoses while toxicity and risk profiles remain formidable. To date, treatment-related symptom burden is gleaned from clinical trial toxicity reports; the patient perspective remains understudied. METHODS: English- or Spanish-speaking patients (ages 8-25 years) undergoing CAR T-cell therapy for any malignancy and their primary caregivers were recruited from Seattle Children's Hospital (SCH), St. Jude Children's Research Hospital (SJCRH), and the Pediatric Oncology Branch of the National Cancer Institute (NCI). Both patient and caregiver completed semi-structured dyadic interviews 3 months post treatment. We used directed content analysis for codebook development and thematic network analysis for inductive qualitative analysis. RESULTS: Twenty families completed interviews (13 patients, 15 parents). Patients were a median age 16.5 years, predominantly female (65%), White (75%), and diagnosed with ALL (75%). Global themes included "A clear decision," "Coping with symptoms," and "Unforeseen psychosocial challenges." When families were asked to describe the "most challenging part of treatment," most described "the unknown." Most reported "the symptoms really weren't that bad," even among patients hospitalized for severe toxicity events. Fatigue, pain, and nausea were the most prevalent symptoms. Importantly, only one family would have chosen a different therapy, if given another opportunity. CONCLUSIONS: Although physical symptoms were largely tolerable, recognizing supportive care opportunities remains imperative, particularly psychosocial concerns.
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Imunoterapia Adotiva , Humanos , Feminino , Masculino , Adolescente , Criança , Imunoterapia Adotiva/efeitos adversos , Imunoterapia Adotiva/métodos , Adulto , Adulto Jovem , Receptores de Antígenos Quiméricos , Cuidadores/psicologia , Seguimentos , Pesquisa Qualitativa , Qualidade de VidaRESUMO
BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. PATIENTS AND METHODS: This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. RESULTS: Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. CONCLUSIONS: AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.
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Neoplasias , Assistência Terminal , Humanos , Adolescente , Adulto Jovem , Qualidade de Vida , Neoplasias/terapia , Neoplasias/psicologia , Pessoal de Saúde , Cuidadores/psicologiaRESUMO
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. © 2016 American Cancer Society.
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Educação/organização & administração , Família , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , Neoplasias/terapia , Cuidados Paliativos , Qualidade de Vida , Adulto , American Cancer Society/organização & administração , Criança , Humanos , Oncologia , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division/organização & administração , Neoplasias/reabilitação , Sistemas de Apoio Psicossocial , Estados UnidosRESUMO
BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end-of-life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care. PROCEDURE: This was a secondary analysis of a qualitative study that aimed to identify priority domains for end-of-life care. Content analysis of semi-structured interviews among AYAs aged 12-39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy. RESULTS: Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short-term and long-term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care. CONCLUSIONS: AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.
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Neoplasias , Qualidade de Vida , Adulto Jovem , Adolescente , Humanos , Acontecimentos que Mudam a Vida , Neoplasias/terapia , Pesquisa Qualitativa , CuidadoresRESUMO
Survivors of childhood, adolescent, and young adult (diagnosed when <25 years of age) cancer are at risk of mental health problems. The aim of this clinical practice guideline is to harmonise international recommendations for mental health surveillance in survivors of childhood, adolescent, and young adult cancer. This guideline was developed by a multidisciplinary panel of experts under the sponsorship of the International Guideline Harmonization Group. We evaluated concordance among existing survivorship clinical practice guidelines and conducted a systematic review following evidence-based methods. Of 7249 studies identified, 76 articles from 12 countries met the inclusion criteria. Recommendations were formulated on the basis of identified evidence in combination with clinical considerations. This international clinical practice guideline strongly recommends mental health surveillance for all survivors of childhood, adolescent, and young adult cancers at every follow-up visit and prompt referral to mental health specialists when problems are identified. Overall, the recommendations reflect the necessity of mental health surveillance as part of comprehensive survivor-focused health care.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Criança , Progressão da Doença , Humanos , Saúde Mental , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/terapia , Sobreviventes/psicologia , Adulto JovemRESUMO
INTRODUCTION: This study explored pediatric oncology healthcare professionals' (HCPs) perspectives on direct communication with children with advanced disease about their disease, palliative care, and end-of-life (EOL) communication. METHODS: Forty-six pediatric oncologists, nurses, psychosocial team members, and other HCPs from six hospital centers in Israel participated in semi-structured interviews. The Grounded Theory method was used. Data were analyzed line-by-line with codes and categories developed inductively from participants' narratives. RESULTS: HCPs viewed communication about disease progression and EOL as vital because children were often aware of their prognosis, because lack of communication could lead to emotional distress, and because communication is a prerequisite for shared decision-making. HCPs identified several barriers for communication including HCP barriers (such as emotional strains, lack of training), parental barriers, guardianship law, and language and culture. HCPs also described strategies to promote EOL communication. Direct strategies include tailoring communication, allowing for silence, echoing children's questions, giving information gradually, and answering direct questions honestly. Indirect strategies included encouraging parents to talk to their children and teamwork with colleagues. CONCLUSIONS: Open communication with children who have cancer is essential. Nevertheless, multiple barriers persist. The rising accessibility of online information calls for urgent training of HCPs in communication so that children will not turn to unmediated and potentially misleading information online in the absence of HCP communication. Evidence-based effective communication training modules and emotional support should be offered to HCPs. Knowledge about children's development, age-appropriate communication, and cultural sensitivity should be included in this training.
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Oncologia , Neoplasias , Criança , Comunicação , Morte , Atenção à Saúde , Pessoal de Saúde/psicologia , Humanos , Masculino , Oncologia/educação , Neoplasias/psicologia , Neoplasias/terapiaRESUMO
Bibliotherapy utilizes storybook readings to foster expressive therapy for children. Storybooks represent a readily available yet underutilized support tool in pediatric hematology and oncology care settings. Storybooks can help explain a new diagnosis, treatment plan, body changes, and identity adjustment in a relatable way for patients to then have a safe space to process questions and emotions. This paper serves as a "how to" guide for clinicians to consider bibliotherapy for a patient, select suitable book options, and introduce and incorporate bibliotherapy as part of comprehensive care.
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Biblioterapia , Criança , HumanosRESUMO
OBJECTIVES: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). METHODS: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. RESULTS: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. SIGNIFICANCE OF RESULTS: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.
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Planejamento Antecipado de Cuidados , Neoplasias , Assistência Terminal , Adolescente , Doença Crônica , Comunicação , Família , Humanos , Neoplasias/complicações , Neoplasias/terapia , Adulto JovemRESUMO
PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in their clinical settings. METHODS: The study used the grounded theory approach to data collection and analysis. Twenty-one pediatric oncologists from six pediatric cancer centers across Israel were interviewed. Data was analyzed using line-by-line coding. RESULTS: The analysis resulted in a four-tiered conceptual model. This model included the following categories: (1) ill-defined concept; (2) philosophies of palliative care; (3) trajectory of palliative care; and (4) palliative care treatment goals. CONCLUSION: The findings illustrate the current conceptualizations of pediatric palliative care among the pediatric oncology community in Israel. The conceptual model documents their understanding of pediatric palliative care as a philosophical approach and the challenges they face in differentiating between palliative care and standard pediatric oncology care. Pediatric palliative care is a highly needed and valued sub-specialty. The findings from this study highlight the importance for its continued development in Israel, as it can reduce the suffering of children and their families. Concurrently, pediatric oncologists need to have more resources and access to explicit knowledge of the conceptual and practical aspects of both primary and specialized pediatric palliative care.
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Formação de Conceito/fisiologia , Oncologistas/psicologia , Cuidados Paliativos/métodos , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. AIM: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. DESIGN: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. SETTING/PARTICIPANTS: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. RESULTS: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists' personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. CONCLUSION: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Oncologistas , Criança , Teoria Fundamentada , Humanos , Cuidados Paliativos , Pesquisa QualitativaRESUMO
PURPOSE: Describe the impact of the COVID-19 pandemic on the work structure, daily care provided, personal lives, and practice models for pediatric oncology social workers (POSW). RESEARCH APPROACH: Cross-sectional online survey on APOSW professional listserv from 10/5/2020 to 11/20/2020. SAMPLE: 101 surveys were completed by POSW from 31 states and the District of Columbia. METHODS: Data were summarized descriptively and with semantic content analyses. FINDINGS: Surveys were completed by social workers from diverse work settings. Seventy-five percent of social workers were deemed "essential," and 45% reported working primarily from home. Most (56%) adopted a form of telehealth for patient care, although 71% did not receive telehealth training and 87% perceived lesser quality of care with telehealth. Nearly 80% of respondents reported not being able to provide optimum psychosocial care. Notable stressors on social work practice included worry about exposure to COVID-19, limited resources, lack of contact with and increased emotional needs of patients and families, managing patient and family concerns about COVID-19, and isolation from colleagues. Inequity and social justice issues were identified. Despite challenges, over 60% of POSW endorsed positive changes to their work life resulting from the pandemic. CONCLUSIONS/INTERPRETATION: As the COVID-19 pandemic persists, POSW have adapted to a changing work environment, different modes of service provision, and stark health inequities to meet the needs of patients and families in a crisis. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: COVID-19 vastly impacted the personal and professional lives of POSW, warranting attentiveness to lessons learned and future directions.
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COVID-19 , Neoplasias/reabilitação , Intervenção Psicossocial/estatística & dados numéricos , Assistentes Sociais/psicologia , Assistentes Sociais/estatística & dados numéricos , Telemedicina/estatística & dados numéricos , Adulto , Criança , Estudos Transversais , Humanos , Teletrabalho/estatística & dados numéricosRESUMO
OBJECTIVE: Psychosocial providers in medical settings are increasingly being asked to identify suicide risk in youth with medical illnesses. This pilot study aimed to determine the acceptability of suicide risk screening among youth with cancer and other serious illnesses and their parents. METHODS: Youth ages 8-21 years presenting to an outpatient medical setting were screened for suicide risk using a modified version of the Ask Suicide-Screening Questions (ASQ) screening tool. Patient and parent perceptions of acceptability were collected. FINDINGS: The sample included 32 patient/parent dyads. The overall positive screen rate was 9.4% (n = 3/32). Most patients (75%; n = 24/32) and parents (84.4%; n = 27/32) reported that medical settings should screen young patients for suicide risk. CONCLUSIONS: Suicide risk screening was acceptable to most patients and parents in a pediatric clinic. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Medically ill patients are at risk for suicide. Universal suicide risk screening using a validated measure can provide meaningful clinical information to patients' families and providers and has the potential to save young lives.
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Pacientes Ambulatoriais , Prevenção do Suicídio , Adolescente , Adulto , Criança , Humanos , Programas de Rastreamento , Pais , Projetos Piloto , Ideação Suicida , Adulto JovemRESUMO
The extent to which oncology social workers (OSWs) are available and adapting to disruptions in service delivery throughout the COVID-19 pandemic is unknown.Objectives: The purpose of this report is to outline the initial impact of COVID-19 on oncology social work practice during the first six months of the pandemic.Methods: As part of a nationwide investigation of workforce conditions for OSWs, three professional organizations surveyed their members to assess the effects of COVID-19 on changes to work hours, employment status, work setting, pay, and mode for patient contact (e.g., telephone or videoconference).Findings: Among 939 OSWs, 20% reported a reduction in work hours, and two-thirds indicated a temporary shift in work to home, with most patient contact occurring primarily via telephone or videoconference.Implications: Results speak to the essential nature of oncology social work and the need for evidence to inform OSW training and advocacy efforts for however long the pandemic continues.
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COVID-19 , Pessoal de Saúde/estatística & dados numéricos , Neoplasias/reabilitação , Prática Profissional/estatística & dados numéricos , Serviço Social/estatística & dados numéricos , Assistentes Sociais/estatística & dados numéricos , Telemedicina/estatística & dados numéricos , Carga de Trabalho/estatística & dados numéricos , Adulto , Humanos , Psico-Oncologia , Telecomunicações , TelefoneRESUMO
OBJECTIVE: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers' moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). METHOD: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. RESULTS: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents' depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. SIGNIFICANCE OF RESULTS: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
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Luto , COVID-19/psicologia , Família/psicologia , Pessoal de Saúde/psicologia , Apoio Social , Assistência Terminal/psicologia , COVID-19/enfermagem , Criança , Feminino , Cuidados Paliativos na Terminalidade da Vida , Humanos , Masculino , Cuidados Paliativos/psicologia , Estados UnidosRESUMO
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
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Neoplasias , Assistência Terminal , Humanos , Criança , Feminino , Adolescente , Pessoa de Meia-Idade , Masculino , Estudos Retrospectivos , Cuidadores , Comunicação , Morte , Pesquisa QualitativaRESUMO
OBJECTIVE: To describe innovative models of psychosocial care delivery that align with published Standards of Psychosocial Care of Children with Cancer and their Families, in efforts to bridge the divide between research and practice. METHODS: The Mattie Miracle Cancer Foundation, in partnership with the American Psychosocial Oncology Society reviewed 22 letters of intent and 13 full grants and awarded small grants to researchers with high quality projects that aimed to implement any of the published 15 Standards of Care. For three of the highest rated funded research projects, we describe the Standard implemented, the novel research design and implementation strategies, and how the research findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps. RESULTS: The first study presented is an innovative eHealth intervention for parents of children with cancer designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults with leukemia, and the third creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers. CONCLUSIONS: Several themes emerged from the studies presented, including (1) attention to barriers to previous attempts at implementation; (2) technology's role in delivering care; (3) the need for stakeholder involvement; and (4) consideration for multi-pronged solutions that address heterogeneity in care settings. Next steps for integrating the Standards of Psychosocial Care into clinical practice are discussed.
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Atenção à Saúde/organização & administração , Neoplasias/psicologia , Neoplasias/terapia , Pediatria/normas , Padrão de Cuidado/organização & administração , Estresse Psicológico/diagnóstico , Estresse Psicológico/terapia , Adolescente , Criança , Prática Clínica Baseada em Evidências , Feminino , Acessibilidade aos Serviços de Saúde/normas , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Oncologia/normas , Avaliação das Necessidades , Pais , Qualidade da Assistência à Saúde , Estresse Psicológico/etiologiaRESUMO
OBJECTIVE: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology. METHODS: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n = 12) and bereaved family members (n = 26) on when and how to effectively implement bereavement risk screening. Data were analyzed using thematic analysis. RESULTS: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support. CONCLUSIONS: The findings suggest that family members appear supportive of sensitively approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.
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Luto , Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos na Terminalidade da Vida , Neoplasias/mortalidade , Cuidados Paliativos , Reabilitação Psiquiátrica , Enfermagem Familiar , Feminino , Pesar , Humanos , Entrevistas como Assunto , Masculino , Oncologia , Pessoa de Meia-Idade , Neoplasias/psicologia , Psico-Oncologia , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To describe levels of loneliness in cancer caregivers over a 6 month time period, and to examine factors that influence changes in loneliness in caregivers over time. METHODS: Prospective, repeated measures design was utilized to examine levels of loneliness and factors that influence loneliness in 129 family caregivers of individuals undergoing cancer treatment at three time points over a 6 month period. Measures included: PROMIS global health and sleep disturbance; NIH Toolbox loneliness, self-efficacy and perceived stress; Family Care Inventory mutuality scale; and Caregiver Reaction Assessment. RESULTS: Approximately one third (30.2%, n = 39) of the caregivers had high levels of loneliness, and levels of loneliness did not change over the three time points (P = .985). For any given time point, caregivers who were not married (P = .008), not working (P = .027), with worse mental health (P = .015), more perceived-stress (P < .0001), and more caregiver burden (P = .003) reported higher levels of loneliness. CONCLUSION: This study provides guidance for clinicians attempting to identify at-risk caregivers by confirming the findings of previous research that caregivers with higher burden, stress and in poor mental health are at increased risk for loneliness. This study provides preliminary evidence that continuing to work during the caregiving trajectory may be beneficial to caregivers by reducing levels of loneliness. Future research is needed to confirm these findings and to examine novel interventions to reduce loneliness in cancer caregivers.
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Cuidadores/psicologia , Solidão/psicologia , Saúde Mental , Neoplasias/psicologia , Adulto , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Neoplasias/enfermagem , Estudos Prospectivos , Adulto JovemRESUMO
OBJECTIVE: While screening for psychosocial distress is now the standard of care in oncology, little guidance is available on how best to deliver services in response to identified needs. The American Psychosocial Oncology Society (APOS) convened a task force with the goal of creating a framework that could aid in planning services and justifying requests for resources. METHODS: Ten experts from multiple disciplines within psychosocial oncology served on the task force, first meeting together as a larger group over 2 days to set an agenda and then subsequently working in smaller teams to execute the goals. The task force used consensus methods for developing recommendations. RESULTS: Three principles were identified for the framework. First, psychosocial oncology is a key component of population health, and population-based approaches to care delivery are required. Second, several key parameters shape psychosocial oncology services: resources, aims, and scope. To guide resource allocation, example priorities were identified for the aims and scope of services. Finally, cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care. A range of practices was ranked by their potential contributions to achieving that goal. CONCLUSIONS: This framework may aid in planning, evaluating, and refining the delivery of responsive psychosocial oncology services.