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1.
J Interprof Care ; : 1-10, 2024 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-38734870

RESUMO

Bias in advanced heart failure therapy allocation results in inequitable outcomes for minoritized populations. The purpose of this study was to examine how bias is introduced during group decision-making with an interprofessional team using Breathett's Model of Heart Failure Decision-Making. This was a secondary qualitative descriptive analysis from a study focused on bias in advanced heart failure therapy allocation. Team meetings were recorded and transcribed from four heart failure centers. Breathett's Model was applied both deductively and inductively to transcripts (n = 12). Bias was identified during discussions about patient characteristics, clinical fragility, and prior clinical decision-making. Some patients were labeled as "good citizens" or as adherent/non-adherent while others benefited from strong advocacy from interprofessional team members. Social determinants of health also impacted therapy allocation. Interprofessional collaboration with advanced heart failure therapy allocation may be enhanced with the inclusion of patient advocates and limit of clinical decision-making using subjective data.

2.
Int J Qual Stud Health Well-being ; 19(1): 2296694, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38213230

RESUMO

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.


Assuntos
Cuidadores , Longevidade , Humanos , Cuidadores/psicologia , Família/psicologia , Emoções , Autocuidado , Pesquisa Qualitativa
4.
J Pain Symptom Manage ; 67(3): e229-e249, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38043748

RESUMO

CONTEXT: Over 43 million caregivers provide care and support in the United States. Increased stress and burden may contribute to poor psychosocial well-being. Recently, there has been an emergence of art-based interventions to improve well-being among care receivers and caregivers. A synthesis of this literature evaluating expressive arts interventions (EAIs) with caregivers is needed. OBJECTIVES: Identify the nature and impact of EAIs for caregivers and outline directions for future research. METHODS: Systematic searches were conducted in PubMed/MEDLINE, CINAHL, PsychINFO, and Web of Science for relevant studies between 2001 and 2022. Inclusion criteria included EAI addressing psychosocial well-being of caregivers, quantitative and mixed methods studies, and written in English. RESULTS: Twenty-seven studies were included (1359 participants). There was a diverse global representation of countries (n = 14). Twelve studies were randomized controlled trials. The majority (n = 11) were conducted with dementia/alzheimers caregivers and 41% (n = 11) were delivered to the caregiver/receiver dyad. Fifty-nine percent of the EAIs were music-based, 22% were visual arts, and 10% were writing. Intervention length varied from a single one-hour session to biweekly for 10-months; eight lasted two-weeks. Overall, stress improved in 80% of the studies, anxiety in 69%, caregiver burden in 57%, and depressive symptoms in 31%. CONCLUSION: Caregivers are essential to the care of people with medically complex and life-limiting conditions. EAIs hold the potential to improve psychosocial outcomes for caregivers, are used globally, and can be culturally tailored. Future research should examine intervention duration and intensity, measures to address additional dimensions of psychsocial well-being, and implementation in additional caregiver populations.


Assuntos
Doença de Alzheimer , Cuidadores , Humanos , Cuidadores/psicologia , Ansiedade , Transtornos de Ansiedade , Qualidade de Vida/psicologia
5.
Am J Hosp Palliat Care ; 41(1): 56-62, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36822189

RESUMO

BACKGROUND AND OBJECTIVES: LGBTQ+ people are more likely to be caregivers for family and friends with life-limiting illnesses than non-LGBTQ+ people. LGBTQ+ caregivers may also experience stigma, bias, and discrimination, in addition to caregiving stress. Yet few studies have elicited LGBTQ+ family caregivers' perspectives on their end-of-life (EOL) experiences of home hospice. RESEARCH DESIGN AND METHODS: We conducted semi-structured interviews with LGBTQ+ family caregivers of home hospice patients (N = 20). Following an interpretive descriptive approach, interview data were audio recorded, transcribed, and iteratively coded, and themes were developed and synthesized. RESULTS: The burden of having to wonder expressed caregivers' uncertainty and concern about whether their negative experiences were common to all EOL caregivers or stemmed from cultural stigma and provider bias. Participants described how invisibility vs. risks of disclosure, anticipatory anxiety, perceived microaggressions, and protective vigilance increased stress and complicated caregiver-provider communication. Navigating EOL universalities vs. minority realities depicted underlying tensions between commonly assumed universalities of EOL caregiving and LGBTQ+-specific experiences. Providers' discomfort, awkward communication, lack of access to culturally competent EOL support resources, and broader structural and cultural discrimination eroded their sense of connectedness and safety. Together, these themes characterized the impact of minority stress at EOL. DISCUSSION AND IMPLICATIONS: Our findings suggest that LGBTQ+ hospice caregivers are at risk for minority stress in addition to more common sources of EOL caregiving pressures and thus have specific support and communication needs. Providers must understand this to deliver effective EOL care for all families.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Assistência Terminal , Humanos , Cuidadores
6.
J Hosp Palliat Nurs ; 25(6): 321-329, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37851960

RESUMO

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs.


Assuntos
Carcinoma Hepatocelular , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias Hepáticas , Humanos , Cuidadores , Incerteza , Estudos Prospectivos , Estudos Retrospectivos
7.
Oncol Nurs Forum ; 50(5): 665-670, 2023 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-37677767

RESUMO

OBJECTIVES: To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving. SAMPLE & SETTING: Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis. METHODS & VARIABLES: Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions. RESULTS: Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age. IMPLICATIONS FOR NURSING: Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.


Assuntos
Hospitais para Doentes Terminais , Neoplasias , Feminino , Humanos , Cuidadores , Sobrecarga do Cuidador , Estudos Longitudinais , Local de Trabalho
8.
Artigo em Inglês | MEDLINE | ID: mdl-37681786

RESUMO

As the U.S. population's demographics shift, young U.S. adults are increasingly engaged in informal caregiving for aging generations. Yet, there is little research on the unique experiences and needs of young adults who take on caregiving roles for adult cancer patients. Herein we demonstrate through a theoretical description that young adult cancer care partners deserve distinct recognition in the cancer control continuum given the psychological, physical, financial, and social features unique to their cancer experience.


Assuntos
Cuidadores , Neoplasias , Humanos , Adulto Jovem , Envelhecimento , Exame Físico , Reconhecimento Psicológico , Neoplasias/terapia
9.
PEC Innov ; 3: 100193, 2023 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-37554722

RESUMO

OBJECTIVE: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. METHODS: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. RESULTS: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). CONCLUSION: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. INNOVATION: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.

10.
J Hosp Palliat Nurs ; 25(5): 286-295, 2023 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-37347956

RESUMO

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Masculino , Humanos , Feminino , Saúde Mental , Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Atividades Cotidianas , Autocuidado , Apoio Social , Neoplasias/terapia , Neoplasias/psicologia
11.
Front Public Health ; 11: 1014773, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37228737

RESUMO

Many clinical processes include multidisciplinary group decision-making, yet few methods exist to evaluate the presence of implicit bias during this collective process. Implicit bias negatively impacts the equitable delivery of evidence-based interventions and ultimately patient outcomes. Since implicit bias can be difficult to assess, novel approaches are required to detect and analyze this elusive phenomenon. In this paper, we describe how the de Groot Critically Reflective Diagnoses Protocol (DCRDP) can be used as a data analysis tool to evaluate group dynamics as an essential foundation for exploring how interactions can bias collective clinical decision-making. The DCRDP includes 6 distinct criteria: challenging groupthink, critical opinion sharing, research utilization, openness to mistakes, asking and giving feedback, and experimentation. Based on the strength and frequency of codes in the form of exemplar quotes, each criterion was given a numerical score of 1-4 with 1 representing teams that are interactive, reflective, higher functioning, and more equitable. When applied as a coding scheme to transcripts of recorded decision-making meetings, the DCRDP was revealed as a practical tool for examining group decision-making bias. It can be adapted to a variety of clinical, educational, and other professional settings as an impetus for recognizing the presence of team-based bias, engaging in reflexivity, informing the design and testing of implementation strategies, and monitoring long-term outcomes to promote more equitable decision-making processes in healthcare.


Assuntos
Tomada de Decisão Clínica , Atenção à Saúde , Humanos , Tomada de Decisões
12.
Artigo em Inglês | MEDLINE | ID: mdl-36981917

RESUMO

Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers' social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers' perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient's death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.


Assuntos
Hospitais para Doentes Terminais , Neoplasias , Humanos , Cuidadores , Estudos Prospectivos , Apoio Social , Percepção
13.
Am J Transplant ; 23(6): 805-814, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36931436

RESUMO

Advanced heart failure (AHF) therapy allocation is vulnerable to bias related to subjective assessments and poor group dynamics. Our objective was to determine whether an implementation strategy for AHF team members could feasibly contribute to organizational and culture change supporting equity in AHF allocation. Using a pretest-posttest design, the strategy included an 8-week multicomponent training on bias reduction, standardized numerical social assessments, and enhanced group dynamics at an AHF center. Evaluations of organizational and cultural changes included pretest-posttest AHF team member surveys, transcripts of AHF meetings to assess group dynamics using a standardized scoring system, and posttest interviews guided by a framework for implementing a complex strategy. Results were analyzed with qualitative descriptive methods and Brunner-Munzel tests for relative effect (RE, RE >0.5 signals posttest improvement). The majority of survey metrics revealed potential benefit with RE >0.5. REs were >0.5 for 5 of 6 group dynamics metrics. Themes for implementation included (1) promoting equitable distribution of scarce resources, (2) requiring a change in team members' time investment to correct bias and change the meeting structure, (3) slowing and then accelerating the allocation process, and (4) adaptable beyond AHF and reinforceable with semi-annual trainings. An implementation strategy for AHF equity demonstrated the feasibility for organizational and culture changes.


Assuntos
Insuficiência Cardíaca , Humanos , Insuficiência Cardíaca/terapia , Inquéritos e Questionários
14.
J Palliat Med ; 26(7): 941-950, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36799950

RESUMO

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health (ß = -0.82 [-1.22 to -0.42], p < 0.001), positive affect and well-being scores (ß = -0.69 [-1.03 to -0.36], p < 0.001), and higher depression (ß = 0.24 [0.12-0.37], p < 0.001) and anxiety scores (ß = 0.22 [0.07-0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (ß = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (ß = 0.45 [0.06 to 0.84], p < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Ansiedade , Cônjuges
15.
J Am Heart Assoc ; 12(5): e027701, 2023 03 07.
Artigo em Inglês | MEDLINE | ID: mdl-36846988

RESUMO

Background US regulatory framework for advanced heart failure therapies (AHFT), ventricular assist devices, and heart transplants, delegate eligibility decisions to multidisciplinary groups at the center level. The subjective nature of decision-making is at risk for racial, ethnic, and gender bias. We sought to determine how group dynamics impact allocation decision-making by patient gender, racial, and ethnic group. Methods and Results We performed a mixed-methods study among 4 AHFT centers. For ≈ 1 month, AHFT meetings were audio recorded. Meeting transcripts were evaluated for group function scores using de Groot Critically Reflective Diagnoses protocol (metrics: challenging groupthink, critical opinion sharing, openness to mistakes, asking/giving feedback, and experimentation; scoring: 1 to 4 [high to low quality]). The relationship between summed group function scores and AHFT allocation was assessed via hierarchical logistic regression with patients nested within meetings nested within centers, and interaction effects of group function score with gender and race, adjusting for patient age and comorbidities. Among 87 patients (24% women, 66% White race) evaluated for AHFT, 57% of women, 38% of men, 44% of White race, and 40% of patients of color were allocated to AHFT. The interaction between group function score and allocation by patient gender was statistically significant (P=0.035); as group function scores improved, the probability of AHFT allocation increased for women and decreased for men, a pattern that was similar irrespective of racial and ethnic groups. Conclusions Women evaluated for AHFT were more likely to receive AHFT when group decision-making processes were of higher quality. Further investigation is needed to promote routine high-quality group decision-making and reduce known disparities in AHFT allocation.


Assuntos
Disparidades em Assistência à Saúde , Insuficiência Cardíaca , Transplante de Coração , Coração Auxiliar , Feminino , Humanos , Masculino , Etnicidade , Dinâmica de Grupo , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/cirurgia , Sexismo
16.
J Adv Nurs ; 79(5): 1724-1734, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-36300709

RESUMO

AIMS: A discussion of the personal and social contexts for Millennial family caregivers and the value of including complex identity and intersectionality in Millennial family caregiving research with practical application. DESIGN: Discussion paper. DATA SOURCES: This discussion paper is based on our own experiences and supported by literature and theory. IMPLICATIONS FOR NURSING: Millennial family caregivers have distinct generational, historical and developmental experiences that contribute to the care they provide as well as their own well-being. Complex identity, the integration of multiple identities, and intersectionality, systems and structures that disempower and oppress individuals with multiple identities, need to be addressed in nursing research so intervention tailoring and health equity can be better supported in this population. From research conceptualization and design to data analysis, data must be used intentionally to promote equity and reduce bias. The inclusion of diverse Millennial caregivers throughout all stages of the research process and having a diverse nursing research workforce will support these efforts. CONCLUSION: Millennial family caregivers comprise one-quarter of the family caregiving population in the United States, and they are more diverse than previous family caregiving generational cohorts. Their needs will be more fully supported by nursing scientists with the adoption of methods and techniques that address complex identity and intersectionality. IMPACT: Nursing researchers can use the following research approaches to address complex identity and intersectionality in Millennial caregivers: inclusion of qualitative demographic data collection (participants can self-describe); data disaggregation; data visualization techniques to augment or replace frequencies and descriptive statistics for demographic reporting; use of researcher reflexivity throughout the research process; advanced statistical modelling techniques that can handle complex demographic data and test for interactions and differential effects of health outcomes; and qualitative approaches such as phenomenology that centre the stories and experiences of individuals within the population of interest.


Assuntos
Cuidadores , Enquadramento Interseccional , Humanos , Estados Unidos , Família , Meio Social
17.
J Pain Symptom Manage ; 65(3): 183-192, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36493980

RESUMO

CONTEXT: Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being. OBJECTIVES: 1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms. METHODS: Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes. RESULTS: Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%). CONCLUSION: Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidadores/psicologia , Estudos Prospectivos , Prevalência , Cuidados Paliativos na Terminalidade da Vida/psicologia
18.
Am J Hosp Palliat Care ; 40(5): 508-516, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-35689339

RESUMO

Context: Family caregivers assume the primary responsibility of assessing and managing hospice cancer patient symptoms while simultaneously managing their own wellbeing and symptoms. Objectives: Describe caregivers' assessment of hospice cancer patient and their own symptoms during the last 60 days of patient life, and assess the relationship between patient and caregiver symptoms over time. Methods: Caregiver symptom report of self and cancer home hospice patient symptom data were collected via telephone in the final 60 days of patient life. Descriptive data on symptom severity and prevalence were summarized. Exploratory Factor Analysis was used to group individual symptoms. Factors representing patient symptoms, caregiver symptoms, and caregiver outlook were analyzed using mixed-effects analysis to determine relationships between factors and change in relationship between factors over time. Results: Data from 61 patient-caregiver dyads are presented. At least 1 day of moderate-to-severe symptoms were reported in the majority of dyads. Significant auto-regressive associations were found, namely previous factor scores for an individual positively predicted the next factor scores for that individual. Previous caregiver report of patient symptoms was also positively associated with the next report of caregiver symptoms; previous caregiver report of their own symptoms were negatively associated with their next report of patient symptoms. Patient and caregiver symptoms and caregiver outlook worsened over time and the relationship between patient and caregiver symptoms strengthened closer to death. Conclusion: Our findings may guide hospice care team responses to caregiver and patient symptoms to promote individual level and unit level functioning.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Humanos , Cuidadores , Morte
19.
Cancer Nurs ; 46(3): E181-E191, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35398867

RESUMO

BACKGROUND: Latino cancer caregivers are at risk of physical, mental, and emotional health issues. Sociocultural factors such as informational support, Anglo orientation, and spiritual practice may compound or protect against these risks. OBJECTIVE: The purpose of this research project was to examine self-efficacy as a mediator between sociocultural factors and health outcomes in Latino cancer caregivers. METHODS: This is a secondary analysis of baseline caregiver data from an experimental study testing two psychoeducational interventions in Latina individuals with breast cancer and their caregivers. Caregivers (N = 233) completed items assessing self-efficacy, informational support, Anglo orientation, spiritual practice, depression, and global health. Caregiver data were analyzed using hierarchical linear regression and mediation analysis. RESULTS: Spiritual well-being was not significantly associated with health outcomes or self-efficacy. In regression analysis, both informational support ( b = 0.32; 95% confidence interval [CI], 0.20 to 0.45; P < .001) and Anglo orientation ( b = 0.15; 95% CI, 0.11 to 2.48; P < .05) were significant predictors of global health, but informational support ( b = -0.43; 95% CI, -0.55 to -0.30; P < .001) was the only significant predictor of depression. There were indirect relationships through self-efficacy for symptom management for both informational support and Anglo orientation and health outcomes. CONCLUSIONS: Informational support and Anglo orientation were significantly related to health outcomes directly and indirectly through self-efficacy in Latino cancer caregivers. IMPLICATIONS FOR PRACTICE: Informational support through the health system and community, when provided with attention to culture and Spanish language translation, can increase Latino cancer caregivers' self-efficacy to care for themselves and improve health outcomes.


Assuntos
Neoplasias da Mama , Cuidadores , Hispânico ou Latino , Autoeficácia , Feminino , Humanos , Acesso à Informação/psicologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Cuidadores/psicologia , Cultura , Hispânico ou Latino/psicologia , Saúde Mental , Fatores Sociais , Apoio Social
20.
Womens Health Rep (New Rochelle) ; 3(1): 944-956, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36479377

RESUMO

Objectives: Older adults face racism, sexism, and ageism. As the U.S. population ages, it is important to understand how the current population views older adults. Methods: Participants recruited through Amazon's Mechanical Turk provided perceptions of older Black and White models' photographs. Using mixed-effect models, we assessed interactions between race and gender of participants and models. Results: Among Participants of Color and White participants (n = 712, 70% non-Hispanic White, 70% women, mean 37.81 years), Black models were perceived as more attractive, less threatening, and sadder than White models, but differences were greater for White participants (race-by-race interaction: attractive p = 0.003, threatening p = 0.009, sad p = 0.016). Each gender perceived their respective gender as more attractive (gender-by-gender interaction p < 0.0001). Male and female participants perceived male models as happier than female models, but differences were greater for male participants (p = 0.026). Irrespective of participant age group, women were perceived as more threatening (p = 0.012). Other perceptions were not significant. Discussion: Participants had few biases toward older Black and White models, while gender biases favored men.

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