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OBJECTIVES: To describe cancer survivors' and care partners' perceived stress and social support during the COVID-19 pandemic and assess the feasibility of audio diaries for assessing role-related needs and resources. METHODS: Participants (Nâ¯=â¯51; nâ¯=â¯28 survivors, nâ¯=â¯23 care partners) recorded three monthly audio diaries reporting stress and support experiences. Diaries were transcribed and content-analyzed using a hybrid approach. Stress-related content was inductively coded, and social support content was deductively coded by type (instrumental, information, emotional, companionship, appraisal; κâ¯=â¯0.75) then inductively coded. Descriptive statistics summarized sociodemographic data and compared coding frequencies by role. We developed narrative summaries of stress and support categories and selected quotes for contextual detail. RESULTS: Cancer-related stressors were most prevalent (28.8%), followed by work (26.8%), family (23.1%), social isolation (13.4%), and finances (8.0%). While no significant difference in reporting frequency was observed between roles, cancer-related stress was more prevalent for survivors while work-related stress was mentioned more by care partners. Emotional support was the most prevalent support type (32.1%), followed by companionship (25.3%), appraisal (17.9%), instrumental (16.67%), and informational support (8%). Survivors reported more appraisal support than care partners (χ2â¯=â¯6.48, dfâ¯=â¯1, Pâ¯=â¯.011) and more support for self-care, while care partners expressed more other-oriented concerns and focused more on managing responsibilities and interactions outside the household. CONCLUSIONS: The pandemic complicated and intensified role-based stressors already present in the survivorship context. Our findings highlight the importance of informal social support networks, particularly when access to formal services is limited, and suggest that audio diaries can be an effective tool for assessing support needs and resources. IMPLICATIONS FOR NURSING PRACTICE: Nurses and healthcare providers should tailor social support assessments to address the distinct support needs and individual resources of cancer survivors and their care partners. This is especially critical in contexts that limit access to care and formal services.
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COVID-19 , Sobreviventes de Câncer , Apoio Social , Estresse Psicológico , Humanos , COVID-19/epidemiologia , COVID-19/enfermagem , COVID-19/psicologia , Masculino , Feminino , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Pessoa de Meia-Idade , Idoso , Adulto , Cuidadores/psicologia , Neoplasias/psicologia , Neoplasias/enfermagem , SARS-CoV-2 , Pandemias , Diários como AssuntoRESUMO
Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive implementation of a structured, peer-to-peer bereavement support program for intensive care unit (ICU) staff at a tertiary children's hospital. Results: Thirty-five virtual sessions were held over the period of one year.Through these sessions, participants shared perspectives and normalized reactions, and explored potential coping strategies. Post-session feedback surveys demonstrated the negative impact of a death on the personal or work life of ICU staff. Additionally, nearly all reported some level of burnout. Conclusions: The sessions were feasible and positively impacted staff coping and well-being. Barriers and facilitators to session attendance, as well as suggestions for improvement, were also explored. Implications for practice and future research are discussed. No clinical trial registration is applicable.
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Luto , Esgotamento Profissional , Assistência Terminal , Criança , Humanos , Pesar , Unidades de Terapia Intensiva , Pessoal de SaúdeRESUMO
BACKGROUND: Pediatric cancer disrupts the lives of siblings in many ways, including physical separations from family and friends that increase risk for distress. Research suggests that siblings use technology and social media to connect with friends and family and seek social support and interaction. However, this may expose siblings to negative online experiences that can erode self-esteem, reducing resilience. OBJECTIVE: This study explored the relationship between online experiences, internet-fostered connection, resilience, and psychosocial health among siblings of children with cancer. METHODS: Participants included adolescent siblings (N = 81; aged 12-17 years) of children with cancer. Most were female (56.8%), and 50.6% represented racially or ethnically minoritized groups. Online experiences, social media use, resilience, and psychosocial health were self-reported and analyzed using structural equation modeling. RESULTS: A majority of siblings reported moderate to severe posttraumatic stress symptoms (PTSSs) (59%) and elevated emotional and behavioral difficulties (EBDs) (53%). Experiencing more positive online experiences was associated with greater perceived connection to family and friends online, but not resilience, PTSSs, or EBDs. In contrast, higher negative online experience scores were significantly associated with more PTSSs and EBDs. In addition, the association between negative online experiences and EBDs was significantly mediated by a negative association between negative online experiences and resilience. CONCLUSIONS: Although social media may be a valuable tool for helping siblings of children with cancer garner social support, negative online experiences may be detrimental to their adjustment. IMPLICATIONS FOR PRACTICE: Efforts should be made to preserve and foster resilience among siblings who use social media for support.
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Purpose: A diagnosis of pediatric cancer can leave healthy siblings with limited access to support. Technology-mediated interpersonal interactions have been noted among adolescent and young adults with cancer and may be an effective source of support for adolescent siblings of children with cancer. In this study, we understand how adolescent siblings use technology to connect with their support network and how their technology use changes after their sibling's cancer diagnosis. Methods: Participants included a national sample (N = 24) of adolescents aged 12-17 who had a sibling diagnosed with cancer in the last 2 years (up to 3 years if still receiving curative-focused treatment). Ecomaps were cocreated with participants to identify sources of social support and modality of interactions. Interviews were transcribed, coded, content analyzed, and descriptively summarized. Results: Adolescent siblings (mean = 14.2 years) perceived technology as a tool to maintain support from their established personal network, rather than a way to expand sources of social support. Most did not seek support or information about cancer outside their known network, preferring information to come from parents or trusted network members. Siblings identified video calls as an important resource for connecting with parents, their sick brother or sister, and others to receive emotional support and companionship. Conclusions: Findings suggest that adolescent siblings of children use technology to connect with their established network for support, an important finding for designing assessments and interventions for this population. Future inquiry should explore these differences, identify unmet needs, and inform acceptable, effective interventions to augment support.
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Neoplasias , Irmãos , Masculino , Adolescente , Adulto Jovem , Humanos , Criança , Irmãos/psicologia , Relações Interpessoais , Pais/psicologia , Apoio Social , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
This study examined the feasibility of Salud Latina, a weekly synchronous online chat intervention, aimed at engaging Latinos in diabetes prevention conversations. Participants were Latino English- and Spanish-speaking individuals. Salud Latina comprised of six synchronous weekly online chats moderated by bilingual Latina moderators trained in diabetes and online engagement. Online chats used open-ended questions. We assessed feasibility, acceptability, and satisfaction of the intervention and qualitatively analyzed the chats to identify barriers and facilitators to healthy behaviors and identify types of support exchanged. Participants (N = 20) were mostly female and English/Spanish bilingual and 80% completed at least four chats. Salud Latina was acceptable, feasible and highly satisfactory. Four themes were identified: (1) barriers to engaging in healthy behaviors, (2) facilitators of healthy behaviors, (3) Salud Latina provides a community of support, and (4) the need to build a Latino culture of health. Participants recognized the importance of engaging in healthy behaviors to prevent or delay T2D. Findings provide insight in how a synchronous online chat intervention could be used to build a social media community within a Latino population to support healthy behaviors. Future research could explore combining synchronous online chats with in-person community or family-level interventions.
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Diabetes Mellitus Tipo 2 , Redes Sociais Online , Feminino , Humanos , Masculino , Comunicação , Diabetes Mellitus Tipo 2/prevenção & controle , Estudos de Viabilidade , Comportamentos Relacionados com a Saúde , Hispânico ou LatinoRESUMO
OBJECTIVES: Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers' heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers' knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers' perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices. METHODS: Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized. RESULTS: Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26-72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers. SIGNIFICANCE OF RESULTS: Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.
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Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Minorias Sexuais e de Gênero , Humanos , Masculino , Feminino , Cuidadores , Identidade de Gênero , Equipe de Assistência ao PacienteRESUMO
OBJECTIVES: Compare rates, clinical characteristics, and outcomes of paediatric palliative care consultation in children supported on extracorporeal membrane oxygenation admitted to a single-centre 16-bed cardiac or a 28-bed paediatric ICU. METHODS: Retrospective review of clinical characteristics and outcomes of children (aged 0-21 years) supported on extracorporeal membrane oxygenation between January, 2017 and December, 2019 compared by palliative care consultation. MEASUREMENTS AND RESULTS: One hundred children (N = 100) were supported with extracorporeal membrane oxygenation; 19% received a palliative care consult. Compared to non-consulted children, consulted children had higher disease severity measured by higher complex chronic conditions at the end of extracorporeal membrane oxygenation hospitalisation (5 versus. 3; p < 0.001), longer hospital length of stay (92 days versus 19 days; p < 0.001), and higher use of life-sustaining therapies after decannulation (79% versus 23%; p < 0.001). Consultations occurred mainly for longitudinal psychosocial-spiritual support after patient survived device deployment with a median of 27 days after cannulation. Most children died in the ICU after withdrawal of life-sustaining therapies regardless of consultation status. Over two-thirds of the 44 deaths (84%; n = 37) occurred during extracorporeal membrane oxygenation hospitalisation. CONCLUSIONS: Palliative care consultation was rare showing that palliative care consultation was not viewed as an acute need and only considered when the clinical course became protracted. As a result, there are missed opportunities to involve palliative care earlier and more frequently in the care of extracorporeal membrane survivors and non-survivors and their families.
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Oxigenação por Membrana Extracorpórea , Criança , Humanos , Cuidados Paliativos , Unidades de Terapia Intensiva Pediátrica , Coração , Hospitalização , Estudos RetrospectivosRESUMO
Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.
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Neoplasias , Irmãos , Criança , Adolescente , Humanos , Pesquisa Interdisciplinar , Oncologia , Neoplasias/terapiaRESUMO
Purpose: The purpose of this study was to describe the social support networks and daily support interactions of cancer-affected individuals, including young adult (YA) and LGBTQIA+ survivors and care partners. Methods: Participants were recruited at two United States cancer centers and via social media for a pilot study testing a novel online method for collecting prospective, daily social support interaction data (N=28). All participants were aged 18+; survivors had a current or recent cancer diagnosis and were engaged in treatment and/or services; care partners were identified by the survivors. Enrollment also purposefully targeted YA and LGBTQIA+ survivors. Social network data (up to 10 members) were assessed at baseline. Daily online surveys assessed support interactions between participants and specific network members over 14 days. Descriptive statistics summarized data and explored between-group (YA/non-YA, LGBTQIA+/non-LGBTQIA+) differences in social network characteristics (size, heterogeneity, density, centralization, cohesion) and support interactions (support source and type). Results: There were no significant differences between YA and non-YA participants on any measures. LGBTQIA+ participants' support networks were less dense (Mdn=0.69 vs. 0.82, p=.02), less cohesive (Mdn=0.85 vs. 0.91,.02), more centered on the participant (Mdn=0.40 vs. 0.24, p=.047), and included more LGBTQIA+ members (Mdn=0.35 vs. 0.00, p<.001). LGBTQIA+ participants reported having more interactions with LGBTQIA+ network members (Mdn=14.0 vs. Mdn=0.00, p<.001) and received significantly more of all types of support from LGBTQIA+ vs. non-LGBTQIA+ members. LGBTQIA+ participants also reported receiving more appraisal support than non-LGBTQIA+ (Mdn 21.64 vs. 9.12, p=.008) including more appraisal support from relatives (Mdn=11.73 vs 6.0, p+.037). Conclusions: Important information related to support access, engagement, and needs is embedded within the everyday contexts of the social networks of cancer-affected people. Individualized, accessible, and prospective assessment could help illuminate how their "real world" support systems are working and identify specific strengths and unmet needs. These insights would inform the development of more culturally competent and tailored interventions to help people understand and leverage their unique support systems. This is particularly critical for groups like YA and LGBTQIA+ survivors and care partners that are underserved by formal support services and underrepresented in cancer, caregiving, and social support research.
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Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Results: Of 291 eligible respondents, 48% (n = 140) completed the survey and 16% (n = 47) answered an open-ended question. Benefits included support in decision-making (n = 98; 70%) and identification of goals of care (n = 89; 64%). Barriers included perception of giving up on families (n = 59; 42%) and poor acceptability by other team members (n = 58; 41%). Respondents endorsed communication with the primary ICU team before (n = 122; 87%) and after (n = 129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.
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Oxigenação por Membrana Extracorpórea , Cuidados Paliativos , Criança , Estudos Transversais , Feminino , Humanos , Cuidados Paliativos/métodos , Encaminhamento e Consulta , Inquéritos e Questionários , Estados UnidosRESUMO
Purpose: This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ). Methods: Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support. Results: Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system. Conclusion: YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.
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Sobreviventes de Câncer , Neoplasias , Feminino , Adulto Jovem , Humanos , Adulto , Apoio SocialRESUMO
Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings. This study addresses this gap in our understanding of the social networks and sources of support for adolescents with a brother or sister who has cancer. Additionally, we describe how the support siblings receive addresses what they feel are the hardest aspects of being a sibling of a child with cancer. During semi-structured interviews, siblings (ages 12-17) constructed ecomaps describing their support networks. Data were coded for support type (emotional, instrumental, informational, validation, companionship) and support provider (e.g., mother, teacher, friend). Network characteristics and patterns of support were explored. Support network size ranged from 3 to 10 individuals (M = 6 ± 1.9); siblings most frequently reported mothers as sources of support (n = 22, 91.7%), followed by fathers (n = 19, 79.2%), close friends (n = 19, 79.2%) and siblings (with or without cancer) (n = 17, 70.8%). Friends and brothers or sisters most often provided validation and companionship while instrumental and informational supports came from parents. This study provides foundational knowledge about siblings' support networks, which can be utilized to design interventions that improve support for siblings of children with cancer.
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PURPOSE: The purpose of this study was to test the feasibility, usability, and acceptability of implementing a web-based method for collecting social network and longitudinal daily interaction data from cancer survivors and their caregivers. METHODS: Young adult and sexual/gender minority cancer survivors and their informal caregivers were recruited as dyads. Feasibility data, including enrollment and retention, were captured. Individual social network data were collected at baseline and used to individualize daily electronically delivered surveys assessing characteristics of daily social support-related interactions with identified network members for 14 days. Follow-up questionnaires assessing usability and exit interviews assessing acceptability were completed at the end of the 2-week study period. RESULTS: Fourteen survivor-caregiver dyads (28 individual participants) were enrolled and completed all baseline and final measures. Participants completed 85.2% of daily diary reports and reported excellent usability ratings. Acceptability was also high. In qualitative interviews, participants reported enjoying the daily reflection on social support facilitated by our methods. CONCLUSIONS: Our method has been shown to be highly feasible, usable, and acceptable. IMPLICATIONS FOR CANCER SURVIVORS: Developing better data collection tools can lead to better understanding of the social support cancer survivors and their caregivers receive, and how the social network structure facilitates or creates barriers to accessing this support.
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Cuidadores , Apoio Social , Estudos de Viabilidade , Humanos , Internet , Rede Social , Adulto JovemRESUMO
OBJECTIVE: There is a lack of evidence on how to best integrate patient-generated health data (PGHD) into electronic health record (EHR) systems in a way that supports provider needs, preferences, and workflows. The purpose of this study was to investigate provider preferences for the graphical display of pediatric asthma PGHD to support decisions and information needs in the outpatient setting. METHODS: In December 2019, we conducted a formative evaluation of information display prototypes using an iterative, participatory design process. Using multiple types of PGHD, we created two case-based vignettes for pediatric asthma and designed accompanying displays to support treatment decisions. Semi-structured interviews and questionnaires with six participants were used to evaluate the display usability and determine provider preferences. RESULTS: We identified provider preferences for display features, such as the use of color to indicate different levels of abnormality, the use of patterns to trend PGHD over time, and the display of environmental data. Preferences for display content included the amount of information and the relationship between data elements. CONCLUSION: Overall, provider preferences for PGHD include a desire for greater detail, additional sources, and visual integration with relevant EHR data. In the design of PGHD displays, it appears that the visual synthesis of multiple PGHD elements facilitates the interpretation of the PGHD. Clinicians likely need more information to make treatment decisions when PGHD displays are introduced into practice. Future work should include the development of interactive interface displays with full integration of PGHD into EHR systems.
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Asma , Apresentação de Dados , Criança , Registros Eletrônicos de Saúde , Humanos , Inquéritos e Questionários , Fluxo de TrabalhoRESUMO
OBJECTIVE: Social support is essential in healthy adjustment to life stressors. This scoping review examines how social support has been conceptualized, operationalized, and studied among siblings of children with cancer. Gaps in the current literature are identified, and future research directions are proposed. METHODS: A rigorous systematic scoping review framework guided our process. Medline, Embase, CINAHL, PsycINFO, and Scopus were searched for literature regarding social support and siblings of children with cancer. After screening, 57 articles were identified (n = 26 quantitative, n = 21 qualitative, and n = 10 multi-method) and their content extracted for summarization. RESULTS: The majority of studies (n = 43, 75.4%) were descriptive; 14 (24.6%) included interventions, and of those, four were experimental. Few studies used a clearly defined theoretical framework, or validated tools to measure social support. Studies explored perceived social support needs of siblings, the provision and availability of formal support through interventions and related outcomes, and informal family social supports. A variety of support types were found to be helpful to siblings in different ways. CONCLUSIONS: Social support is a prevalent topic in the literature regarding siblings of children with cancer. It is unclear what types of support are most important due to how it has been conceptualized and measured. Despite some methodological limitations, greater levels of social support have been linked to better adaptation among siblings of children with cancer. Future work is warranted to identify the most beneficial types of support for siblings based on their age, developmental stage, and the cancer trajectory.
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Neoplasias , Irmãos , Adaptação Psicológica , Criança , Humanos , Apoio SocialRESUMO
OBJECTIVE: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. METHODS: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. MEASUREMENTS AND RESULTS: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. CONCLUSIONS: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.
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Unidades de Terapia Intensiva , Cuidados Paliativos , Idoso , Criança , Humanos , Unidades de Terapia Intensiva Pediátrica , Tempo de Internação , Prevalência , Encaminhamento e Consulta , Estudos RetrospectivosRESUMO
BACKGROUND: Children with cancer have difficulty identifying and describing the multiple symptoms they experience during hospitalization and between clinical encounters. Mobile health resources, including apps, are potential solutions to support child-centric symptom reporting. This study evaluated the feasibility and acceptability of a newly developed game-based symptom-reporting app for school-age children with cancer. PROCEDURE: Nineteen school-age children (6-12 years of age) receiving treatment for cancer at a COG institution in the Intermountain West of the United States used a game-based symptom-reporting app between clinical visits. Feasibility was evaluated through a summary of actual days of app use and interaction with each of the app's features. Children and their parents participated in interviews regarding the app's acceptability. RESULTS: Children used the app a median of 4 days (range 1-12) and interacted most frequently with the symptom reporting and the drawing features. Children enjoyed aspects of the app that supported their creativity and provided choices. Parents endorsed the interactive nature of the app and the value of the child providing his/her own report. Both children and parents identified additional opportunities to enhance the child's user experience. CONCLUSION: Study results support the preliminary feasibility and acceptability of the app. Children's and parents' responses supported the developmental relevance of the app and its role in enhancing the child's autonomy and serving as an outlet for creativity. Future directions include optimizing the child user's experience and investigating the app's role as a resource to enhance shared decision-making for symptom management.
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Aplicativos Móveis , Neoplasias/diagnóstico , Avaliação de Sintomas/métodos , Jogos de Vídeo/estatística & dados numéricos , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pais , Telemedicina/métodosRESUMO
The COVID-19 crisis transformed the way we communicate with each other. Pre-existing theoretical frameworks can build structure out of the chaos; social-interaction theory is one of these. During our social distancing and prior to the vaccine's arrival, physical distancing was adopted as the primary strategy to 'flatten the curve' of the virus's spread. The human desire to connect, however, led to increasing reliance on social-platform outlets. Yet meaningful communication in these forums is elusive and often results in unsatisfying interactions that lack the natural cadence of in-person communications. There is a need to reflect back on how and why our various styles of social-media consumption often paradoxically increase rather than ameliorate our feelings of social isolation. Following this overview, the authors will recommend ways to recognize and change such counterproductive patterns of online activity.
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This study investigated the influence of illness on sexual risk behavior in adolescence and the transition to adulthood, both directly and through moderation of the impact of social disadvantage. We hypothesized positive effects for social disadvantages and illness on sexual risk behavior, consistent with the development of faster life history strategies among young people facing greater life adversity. Using the first two waves of the National Longitudinal Study of Adolescent to Adult Health, we developed a mixed-effects multinomial logistic regression model predicting sexual risk behavior in three comparisons: risky nonmonogamous sex versus safer nonmonogamous sex, versus monogamous sex, and versus being sexually inactive, by social characteristics, illness, interactions thereof, and control covariates. Multiple imputation was used to address a modest amount of missing data. Subjects reporting higher levels of illness had lower odds of having safer nonmonogamous sex (OR = 0.84, p < .001), monogamous sex (OR = 0.82, p < .001), and being sexually inactive (OR = 0.74, p < .001) versus risky nonmonogamous sex, relative to subjects in better health. Illness significantly moderated the sex (OR = 0.88, p < .01), race/ethnicity (e.g., OR = 1.21, p < .001), and childhood SES (OR = 0.94; p < .01) effects for the sexually inactive versus risky nonmonogamous sex comparison. Substantive findings were generally robust across waves and in sensitivity analyses. These findings offer general support for the predictions of life history theory. Illness and various social disadvantages are associated with increased sexual risk behavior in adolescence and the transition to adulthood. Further, analyses indicate that the buffering effects of several protective social statuses against sexual risk-taking are substantially eroded by illness.
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Comportamento do Adolescente/psicologia , Comportamento de Doença/fisiologia , Assunção de Riscos , Comportamento Sexual/psicologia , Determinantes Sociais da Saúde/normas , Adolescente , Adulto , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Adulto JovemRESUMO
BACKGROUND: The Centers for Disease Control and Prevention (CDC) in United States initially alerted the public to three COVID-19 signs and symptoms-fever, dry cough, and shortness of breath. Concurrent social media posts reflected a wider range of symptoms of COVID-19 besides these three symptoms. Because social media data have a potential application in the early identification novel virus symptoms, this study aimed to explore what symptoms mentioned in COVID-19-related social media posts during the early stages of the pandemic. METHODS: We collected COVID-19-related Twitter tweets posted in English language between March 30, 2020 and April 19, 2020 using search terms of COVID-19 synonyms and three common COVID-19 symptoms suggested by the CDC in March. Only unique tweets were extracted for analysis of symptom terms. RESULTS: A total of 36 symptoms were extracted from 30,732 unique tweets. All the symptoms suggested by the CDC for COVID-19 screening in March, April, and May were mentioned in tweets posted during the early stages of the pandemic. DISCUSSION: The findings of this study revealed that many COVID-19-related symptoms mentioned in Twitter tweets earlier than the announcement by the CDC. Monitoring social media data is a promising approach to public health surveillance.