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1.
Health Commun ; 37(5): 568-576, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-33289430

RESUMO

Scholarship in the field of health communication is broad, with interdisciplinary contributions from researchers trained in a variety of fields including communication, nursing, medicine, pharmacy, public health, and social work. In this paper, we explore the role of "health communication boundary spanners" (HCBS), individuals whose scholarly work and academic appointment reflect dual citizenship in both the communication discipline and the health professions or public health. Using a process of critical reflective inquiry, we elucidate opportunities and challenges associated with HCBS across the spectrum of health communication in order to provide guidance for individuals pursuing boundary spanning roles and those who supervise and mentor them. This dual citizen role suggests that HCBS have unique skills, identities, perspectives, and practices that contribute new ways of being and knowing that transcend traditional disciplinary boundaries. The health communication field is evolving in response to the need to address significant healthcare and policy problems. No one discipline has the ability to single-handedly fix our current healthcare systems. Narrative data from this study illustrate the importance of seeing HCBS work beyond simply being informed by disciplinary knowledge. Rather, we suggest that adapting ways of knowing and definitions of expertise is an integral part of the solution to solving persistent health problems.


Assuntos
Comunicação em Saúde , Humanos , Comunicação Interdisciplinar , Conhecimento , Resolução de Problemas
2.
Palliat Med ; 35(2): 389-396, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33225821

RESUMO

BACKGROUND: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share. AIM: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. DESIGN: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. SETTING/PARTICIPANTS: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. RESULTS: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. CONCLUSIONS: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.


Assuntos
Cuidadores , Neoplasias , Comunicação , Humanos , Projetos Piloto
3.
J Genet Couns ; 29(3): 399-409, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31605434

RESUMO

Family communication about health is critical for the dissemination of information that may improve health management of all family members. Communication about health issues, attitudes, and behaviors in families is associated with life expectancy as well as quality of life for family members. This study addresses family communication about health by examining individual roles for family health communication and factors related to these roles, among families of three different racial/ethnic groups: Caucasians, Latinos, and Pacific Islanders. Data were collected from 60 participants recruited as 30 family dyads, 10 from each group, through qualitative semistructured interviews. Interviews were conducted with each participant separately and then together in a dyadic interview. Two coders independently coded interview transcripts using NVivo 11. Results identified the family health communication roles of collector, disseminator, health educator, and researcher. We also identified several factors related to these roles using the lens of family systems theory-the presence of chronic conditions in the family, previous experience, medical education, and family hierarchy. Findings demonstrate many similarities and relatively few differences in the family health communication roles and the related factors among the families of different race/ethnicity. Conclusions highlight implications for future research and intervention development.


Assuntos
Comunicação em Saúde , Hispânico ou Latino , Havaiano Nativo ou Outro Ilhéu do Pacífico , População Branca , Família , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida , Papel (figurativo)
4.
J Fam Nurs ; 26(2): 126-137, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32475300

RESUMO

Primary brain cancer is a diagnosis that can have drastic health impacts on patient and caregiver alike. In high-stress situations, dyadic coping can improve psychosocial and health outcomes and communication about personal life goals maybe one way to facilitate this coping. In this study, we describe the feasibility and accessibility of a one-time, self-directed goal discussion pilot intervention for neuro-oncology patients and their primary caregivers. Ten dyads were taken to a private room to complete a pre-discussion questionnaire, a worksheet to elicit personal goals, complete an 8-min discussion of goals, a post-discussion questionnaire, and provided open-ended feedback about the process. Post-discussion, dyads reported that the intervention was not stressful. In open-ended feedback, dyads overwhelmingly reported that the intervention was a positive experience, providing a safe, calm environment to have difficult conversations. This intervention provides a positive framework for improving communication and discussion of goals between patient-caregiver dyads.


Assuntos
Cuidadores/psicologia , Comunicação , Família/psicologia , Relações Interpessoais , Neoplasias/enfermagem , Neoplasias/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estresse Psicológico , Inquéritos e Questionários
5.
Psychooncology ; 28(5): 1102-1109, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30883985

RESUMO

OBJECTIVE: Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement. METHODS: This prospective, observational longitudinal study included hospice nurses (N = 58) and family caregivers of cancer patients (N = 101) recruited from 10 hospice agencies in the United States. Digitally recorded nurse home visit conversations were coded using Roter interaction analysis system to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6, and 12 months after patient death. RESULTS: Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement. CONCLUSIONS: This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term but may struggle more over time.


Assuntos
Luto , Cuidadores/psicologia , Comunicação , Depressão/psicologia , Emoções , Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/enfermagem , Enfermeiras e Enfermeiros , Relações Profissional-Família , Cônjuges/psicologia , Idoso , Feminino , Serviços de Assistência Domiciliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Angústia Psicológica
6.
J Genet Couns ; 28(5): 950-961, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31199558

RESUMO

Genetic test results have important implications for close family members. Indeterminate negative results are the most common outcome of BRCA1/2 mutation testing. Little is known about family members' understanding of indeterminate negative BRCA1/2 test results. The purpose of this mixed-methods study was to investigate how daughters and sisters received and understood genetic test results as shared by their mothers or sisters. Participants included 81 women aged 40-74 with mothers or sisters previously diagnosed with breast cancer and who received indeterminate negative BRCA1/2 test results. Participants had never been diagnosed with breast cancer nor received their own genetic testing or counseling. This Institutional Review Board-approved study utilized semi-structured interviews and surveys. Descriptive coding with theme development was used during qualitative analysis. Participants reported low amounts of information shared with them. Most women described test results as negative and incorrectly interpreted the test to mean there was no genetic component to the pattern of cancer in their families. Only seven of 81 women accurately described test results consistent with the meaning of an indeterminate negative. Our findings demonstrate that indeterminate negative genetic test results are not well understood by family members. Lack of understanding may lead to an inability to effectively communicate results to primary care providers and missed opportunities for prevention, screening, and further genetic testing. Future research should evaluate acceptability and feasibility of providing family members letters they can share with their own primary care providers.


Assuntos
Neoplasias da Mama/diagnóstico , Genes BRCA1 , Genes BRCA2 , Adulto , Idoso , Neoplasias da Mama/genética , Comunicação , Aconselhamento , Família/psicologia , Feminino , Aconselhamento Genético/métodos , Predisposição Genética para Doença , Testes Genéticos/métodos , Humanos , Pessoa de Meia-Idade , Núcleo Familiar , Irmãos , Inquéritos e Questionários
7.
Palliat Support Care ; 17(5): 523-530, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-29761752

RESUMO

OBJECTIVE: Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. METHOD: A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. RESULT: Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. SIGNIFICANCE OF RESULTS: Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.


Assuntos
Cuidadores/psicologia , Comunicação , Cuidados de Enfermagem/psicologia , Pacientes/psicologia , Papel (figurativo) , Idoso , Feminino , Hospitais para Doentes Terminais/métodos , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Cuidados de Enfermagem/métodos , Pesquisa Qualitativa
8.
Palliat Support Care ; 17(5): 579-583, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30841945

RESUMO

OBJECTIVE: Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses' use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress. METHOD: Researchers performed a directed content analysis of audiorecordings of 65 hospice nurses' home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques. RESULT: All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques. SIGNIFICANCE OF RESULTS: Although hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Relações Enfermeiro-Paciente , Enfermeiras e Enfermeiros/psicologia , Adulto , Idoso , Cuidadores/psicologia , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Hospitais para Doentes Terminais/organização & administração , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/estatística & dados numéricos , Pacientes/psicologia , Pesquisa Qualitativa
9.
Palliat Support Care ; 16(2): 209-219, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-28464961

RESUMO

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. METHOD: Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. RESULTS: Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05). SIGNIFICANCE OF RESULTS: Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.


Assuntos
Cuidadores/psicologia , Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida/métodos , Adulto , Feminino , Grupos Focais , Serviços de Assistência Domiciliar/organização & administração , Serviços de Assistência Domiciliar/tendências , Cuidados Paliativos na Terminalidade da Vida/tendências , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Humanos , Masculino , Enfermeiras e Enfermeiros/psicologia , Pesquisa Qualitativa , Recursos Humanos
10.
Psychooncology ; 26(12): 2285-2293, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28029712

RESUMO

OBJECTIVE: Few studies have examined the triadic communication between patients, spouse caregivers, and nurses in the home hospice setting. Thus, little is known about the types of communication patterns that unfold. The goals of the study were to, first, identify common patterns of communication in nurse-patient-caregiver home hospice visits and, second, to identify nurse, caregiver-patient dyad, and visit characteristics that predict visit communication patterns. METHOD: Nurses (N = 58) and hospice cancer patient and spouse caregiver dyads (N = 101; 202 individuals) were recruited from 10 hospice agencies. Nurses audio recorded visits to patient/caregiver homes from study enrollment until patient death. All patient, caregiver, and nurse utterances from the audio recordings were coded using an adapted Roter interaction analysis system. Using identified codes, cluster analysis was conducted to identify communication patterns within hospice visits. Logistic regression was used with demographic variables to predict visit communication patterns. RESULTS: Six visit communication patterns were identified and were defined largely by 2 dimensions: (1) either the patient, the caregiver, or the patient and caregiver dyad interacting with the nurse and (2) the relatively high or low expression of distress during the visit. Time until death significantly predicted several clusters. CONCLUSION: This study leads the way in outlining triadic communication patterns in cancer home hospice visits. Our findings have implications for nursing education, letting future nurses know what to expect, and lays the foundation for future research to determine effectiveness and interventions to improve health care communication.


Assuntos
Cuidadores/psicologia , Comunicação , Cuidados Paliativos na Terminalidade da Vida/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Neoplasias/enfermagem , Relações Enfermeiro-Paciente , Adulto , Idoso , Feminino , Humanos , Modelos Logísticos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Estresse Psicológico/psicologia
11.
J Health Commun ; 22(10): 839-848, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28956728

RESUMO

The 2015 announcement of the Precision Medicine Initiative (PMI) galvanized and energized efforts to reconsider medical practice through tailoring of prevention and treatment recommendations based on genetics, environment, and lifestyle. Numerous disciplines contributed white papers identifying challenges associated with PMI and calling for discipline-specific research that might provide solutions to such challenges. Throughout these white papers, the prominence of communication in achieving the PMI's goals is obviously apparent. In this article, we highlight opportunities for communication scholars' contributions to the PMI based on challenges identified in white papers from other disciplines and work already conducted by research teams in the field of communication.


Assuntos
Comunicação , Medicina de Precisão , Pesquisa , Humanos
12.
J Genet Couns ; 25(2): 258-69, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26245632

RESUMO

The most common result of BRCA1/2 mutation testing when performed in a family without a previously identified mutation is an uninformative negative test result. Women in these families may have an increased risk for breast cancer because of mutations in non-BRCA breast cancer predisposition genes, including moderate- or low-risk genes, or shared environmental factors. Genetic counselors often encourage counselees to share information with family members, however it is unclear how much information counselees share and the impact that shared information may have on accuracy of risk perception in family members. We evaluated 85 sisters and daughters of women who received uninformative negative BRCA1/2 results. We measured accuracy of risk perception using a latent variable model where accuracy was represented as the correlation between perceived risk (indicators = verbal and quantitative measures) and calculated risk (indicators = Claus and BRCAPRO). Participants who reported more information was shared with them by their sister or mother about her genetic counseling session had greater accuracy of risk perception (0.707, p = 0.000) than those who reported little information was shared (0.326, p = 0.003). However, counselees shared very little information; nearly 20 % of family members reported their sister or mother shared nothing with them about her genetic counseling. Family members were generally not aware of the existence of a genetic counseling summary letter. Our findings underscore the need for effective strategies that facilitate counselees to share information about their genetic counseling sessions. Such communication may help their relatives better understand their cancer risks and enhance risk appropriate cancer prevention.


Assuntos
Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Família/psicologia , Aconselhamento Genético/métodos , Aconselhamento Genético/psicologia , Predisposição Genética para Doença/genética , Predisposição Genética para Doença/psicologia , Testes Genéticos/métodos , Conhecimentos, Atitudes e Prática em Saúde , Adulto , Idoso , Comunicação , Feminino , Humanos , Pessoa de Meia-Idade , Modelos Teóricos , Mutação , Medição de Risco/métodos
13.
Health Commun ; 31(7): 789-97, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-26580414

RESUMO

In this article, we present strategies for collecting and coding a large longitudinal communication data set collected across multiple sites, consisting of more than 2000 hours of digital audio recordings from approximately 300 families. We describe our methods within the context of implementing a large-scale study of communication during cancer home hospice nurse visits, but this procedure could be adapted to communication data sets across a wide variety of settings. This research is the first study designed to capture home hospice nurse-caregiver communication, a highly understudied location and type of communication event. We present a detailed example protocol encompassing data collection in the home environment, large-scale, multisite secure data management, the development of theoretically-based communication coding, and strategies for preventing coder drift and ensuring reliability of analyses. Although each of these challenges has the potential to undermine the utility of the data, reliability between coders is often the only issue consistently reported and addressed in the literature. Overall, our approach demonstrates rigor and provides a "how-to" example for managing large, digitally recorded data sets from collection through analysis. These strategies can inform other large-scale health communication research.


Assuntos
Comunicação , Coleta de Dados , Conjuntos de Dados como Assunto , Serviços de Assistência Domiciliar/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Projetos de Pesquisa , Cuidadores/psicologia , Pesquisa sobre Serviços de Saúde , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Estudos Longitudinais
14.
J Health Commun ; 20(10): 1155-65, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26042456

RESUMO

Through a social identity theoretical lens, this study examines how nurses' identification with their working small group, unit, or floor, nursing role (e.g., staff ER nurse, nurse practitioner), and nursing profession relate to nurses' interaction involvement, willingness to confront conflict, feelings of learned helplessness, and tenure (employment turnover) intentions. A cross-sectional survey (N = 466) was conducted at a large, quaternary care hospital system. Structural equation modeling uncovered direct and indirect effects between the five primary variables. Findings demonstrate direct relationships between nurse identity (as a latent variable) and interaction involvement, willingness to confront conflict, and tenure intentions. Feelings of learned helplessness are attenuated by increased nurse identity through interaction involvement and willingness to confront conflict. In addition, willingness to confront conflict and learned helplessness mediate the relationship between interaction involvement and nurses' tenure intentions. Theoretical extensions include indirect links between nurse identity and learned helplessness via interaction involvement and willingness to confront conflict. Implications for interpersonal communication theory development, health communication, and the nursing profession are discussed.


Assuntos
Recursos Humanos de Enfermagem Hospitalar/psicologia , Reorganização de Recursos Humanos , Identificação Social , Adulto , Comunicação , Estudos Transversais , Feminino , Desamparo Aprendido , Humanos , Intenção , Relações Interprofissionais , Masculino , Pessoa de Meia-Idade , Modelos Psicológicos , Recursos Humanos de Enfermagem Hospitalar/estatística & dados numéricos
15.
Palliat Support Care ; 13(3): 465-72, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24528800

RESUMO

OBJECTIVE: The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs. METHOD: As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match. RESULTS: Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed. SIGNIFICANCE OF RESULTS: Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.


Assuntos
Cuidadores/psicologia , Dissidências e Disputas , Cuidados Paliativos na Terminalidade da Vida/psicologia , Enfermeiros de Saúde Comunitária/psicologia , Apoio Social , Emoções , Grupos Focais , Humanos
16.
J Natl Cancer Inst ; 115(8): 886-895, 2023 08 08.
Artigo em Inglês | MEDLINE | ID: mdl-37212639

RESUMO

Adequate nutrition is central to well-being and health and can enhance recovery during illness. Although it is well known that malnutrition, both undernutrition and overnutrition, poses an added challenge for patients with cancer diagnoses, it remains unclear when and how to intervene and if such nutritional interventions improve clinical outcomes. In July 2022, the National Institutes of Health convened a workshop to examine key questions, identify related knowledge gaps, and provide recommendations to advance understanding about the effects of nutritional interventions. Evidence presented at the workshop found substantial heterogeneity among published randomized clinical trials, with a majority rated as low quality and yielding mostly inconsistent results. Other research cited trials in limited populations that showed potential for nutritional interventions to reduce the adverse effects associated with malnutrition in people with cancer. After review of the relevant literature and expert presentations, an independent expert panel recommends baseline screening for malnutrition risk using a validated instrument following cancer diagnosis and repeated screening during and after treatment to monitor nutritional well-being. Those at risk of malnutrition should be referred to registered dietitians for more in-depth nutritional assessment and intervention. The panel emphasizes the need for further rigorous, well-defined nutritional intervention studies to evaluate the effects on symptoms and cancer-specific outcomes as well as effects of intentional weight loss before or during treatment in people with overweight or obesity. Finally, although data on intervention effectiveness are needed first, robust data collection during trials is recommended to assess cost-effectiveness and inform coverage and implementation decisions.


Assuntos
Desnutrição , Neoplasias , Humanos , Estado Nutricional , Obesidade/complicações , Obesidade/prevenção & controle , Desnutrição/complicações , Desnutrição/prevenção & controle , Neoplasias/complicações , Neoplasias/prevenção & controle , Sobrepeso
17.
J Pain Symptom Manage ; 63(2): 283-292, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34425211

RESUMO

CONTEXT: Navigating end-of-life is stressful and many caregivers feel unprepared for caregiving tasks. Being employed may further increase caregiver burden. OBJECTIVES: Study objectives were 1) to examine the relationships among caregiver burden (financial burden, daily schedule disruption, lack of family support) and mental health (depression and anxiety), and 2) explore if preparedness for caregiving mediates these relationships in employed hospice caregivers. METHODS: This was a secondary analysis of baseline data from a prospective multi-site project of hospice family caregivers of cancer patients. Employed hospice caregivers (n = 166) completed items assessing burden, mental health, and preparedness for caregiving. Hierarchical linear regression and mediation analysis were conducted. RESULTS: Caregivers were primarily White (n = 155, 93%) and female (n = 116, 70%), with a mean age of 55 (SD = 11.7). After controlling for demographic variables, financial burden was significantly related to anxiety (b =.16[.001, .32], P <.05), lack of family support was significantly related to depression (b = 1.27[.76, 1.79], P <.01), and daily schedule disruption was significantly related to both anxiety (b = 1.92[1.07, 2.77], P <.01), and depression (b =.70[.14, 1.26], P <.05) in regression analyses. In mediation analysis, financial burden, daily schedule disruption, and lack of family support were indirectly related to both depression and anxiety through preparedness for caregiving. CONCLUSION: To better support employed caregivers, hospice team members should be ready to address concerns about finances, daily schedule changes, and family support and screen for preparedness for caregiving. Developing strategies to help employed hospice caregivers feel more prepared may mitigate adverse mental health outcomes.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Cuidadores/psicologia , Depressão , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Saúde Mental , Pessoa de Meia-Idade , Estudos Prospectivos
18.
J Community Genet ; 12(4): 617-630, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34415555

RESUMO

Genetic testing is becoming an integral part of healthcare, but evidence suggests that both race and ethnicity influence access to and utilization of genetic testing. Given this barrier, data are needed on the perceptions of genetic testing in racial and ethnic minority groups. The purpose of this study was to explore the perceptions of three types of genetic testing (genetic testing for adult-onset conditions, prenatal screening, and newborn screening) in a sample of US participants who identified as White, Pacific Islander, and Latinx (10 dyads from each group for 60 participants total). Data were collected through semi-structured dyadic interviews and assessed using thematic analysis. The major themes were knowledge as empowering, knowledge as stressful, and predictive nature of prenatal testing and newborn screening. Some differences were seen in themes by race and ethnicity. A sense of collective and familial health appeared to be a more important theme for Pacific Islander and Latinx participants compared to White participants. Adult-onset genetic testing was viewed variously across all groups with some noting how it may increase anxiety, particularly if the disease screened for was unable to be prevented with action. All three groups reported on the positives of prenatal testing and newborn screening yet often were confused on the differences between them. This study presents novel perceptions of genetic testing in participants from diverse communities across three types of genetic testing. Genetic healthcare providers should incorporate participants' perceptions, values, and beliefs into their counseling delivery as a way to engage with diverse communities.

19.
J Pain Symptom Manage ; 62(5): 1092-1099, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34098012

RESUMO

CONTEXT: Simplifying medication regimens by tapering and/or withdrawing unnecessary drugs is important to optimize quality of life and safety for patients with serious illness. Few resources are available to educate clinicians, patients and family caregivers about this process. OBJECTIVE: To describe the development of an educational program called Shared Medication PLanning In (SIMPLIfy) Home Hospice. METHODS: An environmental scan identified a state-of-the-art educational program for home hospice deprescribing that we adapted using a stakeholder panel engagement process. The stakeholder panel (two hospice administrators, three nurses, two physicians, two pharmacists, and two former family caregivers) drawn from two geographically diverse hospice agencies reviewed the educational program and recommended additional content. RESULTS: Iterative rounds of review and feedback resulted in: 1) a three-part clinician educational program (total duration = 1.5 hour) that presents a standardized, goal-concordant, medication review approach to align medications and conversations about regimen simplification with patient and family caregiver goals of care; 2) a patient-family caregiver medication management educational notebook that presents common symptoms, hospice medications, and medication regimen simplification principles; and 3) a brief guide including helpful phrases to use as conversation starters for key steps in the program. A professional designer created thematic coherence for all materials that was well received by stakeholder panelists and hospice staff. CONCLUSION: Educational materials can support hospice programs' and clinicians' efforts to implement goal-concordant medication simplification that optimizes end-of-life outcomes for patients and family caregivers. Evaluation of outcomes including medication appropriateness and family caregiver medication administration burden are not yet available.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Preparações Farmacêuticas , Cuidadores , Objetivos , Humanos , Qualidade de Vida
20.
Patient Educ Couns ; 104(8): 2054-2059, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33454147

RESUMO

OBJECTIVE: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. METHODS: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). RESULTS: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. CONCLUSION: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. PRACTICE IMPLICATIONS: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Cuidadores , Hospitalização , Humanos , Alta do Paciente
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