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1.
Support Care Cancer ; 32(3): 198, 2024 Feb 28.
Artigo em Inglês | MEDLINE | ID: mdl-38416143

RESUMO

PURPOSE: This study aimed to test the feasibility and acceptability of a digital health promotion intervention for family caregivers of patients with advanced colorectal cancer and explore the intervention's preliminary efficacy for mitigating the impact of caregiving on health and well-being. METHODS: We conducted a single-arm pilot feasibility trial of C-PRIME (Caregiver Protocol for Remotely Improving, Monitoring, and Extending Quality of Life), an 8-week digital health-promotion behavioral intervention involving monitoring and visualizing health-promoting behaviors (e.g., objective sleep and physical activity data) and health coaching (NCT05379933). A priori benchmarks were established for feasibility (≥ 50% recruitment and objective data collection; ≥ 75% session engagement, measure completion, and retention) and patient satisfaction (> 3 on a 1-5 scale). Preliminary efficacy was explored with pre- to post-intervention changes in quality of life (QOL), sleep quality, social engagement, and self-efficacy. RESULTS: Participants (N = 13) were M = 52 years old (SD = 14). Rates of recruitment (72%), session attendance (87%), assessment completion (87%), objective data collection (80%), and retention (100%) all indicated feasibility. All participants rated the intervention as acceptable (M = 4.7; SD = 0.8). Most participants showed improvement or maintenance of QOL (15% and 62%), sleep quality (23% and 62%), social engagement (23% and 69%), and general self-efficacy (23% and 62%). CONCLUSION: The C-PRIME digital health promotion intervention demonstrated feasibility and acceptability among family caregivers of patients with advanced colorectal cancer. A fully powered randomized controlled trial is needed to test C-PRIME efficacy, mechanisms, and implementation outcomes, barriers, and facilitators in a divserse sample of family caregivers. TRIAL REGISTRATION: The Caregiver Protocol for Remotely Improving, Monitoring, and Extending Quality of Life (C-PRIME) study was registered on clinicaltrials.gov, NCT05379933, in May 2022.


Assuntos
Cuidadores , Neoplasias Colorretais , Humanos , Pessoa de Meia-Idade , Estudos de Viabilidade , Promoção da Saúde , Qualidade de Vida , Projetos Piloto
2.
Fam Pract ; 41(2): 155-160, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-37950458

RESUMO

PURPOSE: Antibiotic use and misuse are common in pregnant women and young children. Few studies have assessed real-world discussions of antibiotics in these populations. Using social media posts of pregnant women and parents, our goal was to identify key themes about facilitators and barriers to appropriate antibiotic usage. METHODS: A purposive sample of public posts and comments relevant to antibiotic use was collected from the BabyCenter United States social media site. Using a directed content analysis, themes related to facilitators and barriers to appropriate antibiotic use were identified. RESULTS: Seven hundred and twenty-six posts and 5227 comments were analysed. Themes centred around individual factors, interpersonal factors, and structural factors. Individual factors included knowledge and beliefs. Though misinformation was present, most parents were aware of appropriate antibiotic usage and perceived antibiotics as safe and effective. Some hesitance around using antibiotics led to recommendations for home remedies or over-the-counter treatments. Interpersonal factors focused on a lack of available offline peer support, the expertise of providers, as well as a potential lack of attention from those providers. Structural factors, including access to care, also impacted parents' antibiotic use and misuse. CONCLUSION: Though most parents demonstrated appropriate knowledge about antibiotics and a willingness to follow guidelines, negative experiences with their providers, a lack of support from peers, and structural factors presented as potential barriers to appropriate antibiotic use. Implementing avenues for peer support for parents, allowing more time for providers to address parents' concerns, and improving access to providers could improve appropriate antibiotic use in parents.


Assuntos
Poder Familiar , Pais , Criança , Humanos , Feminino , Gravidez , Pré-Escolar , Gestantes , Aconselhamento , Antibacterianos/uso terapêutico
3.
Future Oncol ; 19(2): 173-188, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36974606

RESUMO

Aim: To develop a cognitive dysfunction (CD) focused questionnaire to evaluate caregiver burden in glioblastoma. Materials & methods: The survey was developed from stakeholder consultations and a pilot study, and disseminated at eight US academic cancer centers. Caregivers self-reported caring for an adult with glioblastoma and CD. Results: The 89-item survey covered demographics, CD symptoms and caregiver burden domains. Among 185 caregivers, most were white, educated females and reported memory problems as the most common CD symptom. An exposure-effect was observed, with increase in number of CD symptoms significantly associated with greater caregiver burden. Conclusion: This questionnaire could guide caregiver interventions and be adapted for use longitudinally, in community cancer settings, and in patients with brain metastases.


Glioblastoma (GBM) is a very aggressive brain cancer. People who have GBM have trouble remembering things and are unable to do things they used to do. These changes can be very hard. Researchers are trying to better understand what it is like for people who take care of people with GBM (or caregivers). In this study, researchers created a new survey for caregivers. The survey included questions about what caregivers see happening in their loved one with GBM. Caregivers said that memory problems were common. Also, when the patient had more problems the caregiver had a harder time, too. Researchers hope to improve the survey and use it in the future for more studies.


Assuntos
Disfunção Cognitiva , Glioblastoma , Adulto , Feminino , Humanos , Cuidadores/psicologia , Glioblastoma/complicações , Glioblastoma/terapia , Glioblastoma/patologia , Projetos Piloto , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/terapia , Inquéritos e Questionários , Qualidade de Vida
4.
Support Care Cancer ; 31(5): 314, 2023 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-37126099

RESUMO

PURPOSE: Goals provide insight into what is important to an individual. We describe the development and application of a mixed methods approach to elicit goals and perceptions about goals in patients with advanced cancer. METHODS: Patients receiving first-line treatment for advanced lung cancer participated in semi-structured interviews about their goals. Participants self-generated goals, then selected and ranked their three most important goals and provided Likert scale ratings of goal-related perceptions (e.g., attainability, locus of control). Independent raters coded goals into content domains. One month later, participants reported perceived progress toward goals and facilitators of and barriers to progress. RESULTS: Participants (N = 75, Mage = 64.5 years, 59% female) identified goals across eight domains: social/role/relationship, everyday/practical, leisure/pleasure, psychological/existential/spiritual, major life changes or achievements, cancer treatment response/disease outcomes, palliative outcomes, and behavioral health improvement. Of all goals identified (N = 352), 72% of patients had at least one social/role/relationship goal, 68% had a leisure/pleasure goal, and 29% had a cancer treatment response goal. On average, participants considered their goals to be attainable, perceived a high degree of control over reaching goals, anticipated making "some" progress in the short term, and perceived a high likelihood of reaching goals in the future. Facilitators of progress included mental fortitude, feeling physically well, and social support. Barriers included cancer-related side effects, practical challenges, and COVID-19. CONCLUSIONS: A majority of participant goals focused on meaningful engagement and living well. Goals were largely viewed as attainable and under participants' control. Cancer clinicians may consider how to support patients in working toward valued goals in conjunction with oncology care.


Assuntos
COVID-19 , Neoplasias Pulmonares , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Objetivos , Motivação , Emoções
5.
Arch Phys Med Rehabil ; 104(10): 1580-1587, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37075965

RESUMO

OBJECTIVE: To examine preliminary effects of ReStoreD (Resilience after Stroke in Dyads) on resilience in couples coping with stroke-related challenges. DESIGN: Supplemental analysis of prospective pilot trial with pre-/post-assessments and 3-month follow-up. SETTING: Community. PARTICIPANTS: Thirty-four cohabitating stroke-care partner dyads (N=34); at least 3 months post-stroke. INTERVENTIONS: 8-week self-administered dyadic intervention (ReStoreD) consisting of activities completed individually and as a couple. MAIN OUTCOME MEASURES: 10-item Connor-Davidson Resilience Scale. RESULTS: Care partner baseline resilience scores were significantly higher than persons with stroke scores. Repeated-measures analysis of variance suggest significant pre-post improvement in resilience for persons with stroke (mean difference [I - J]=-2.42, SE=.91, P=.04, 95% CI [-4.75, -0.08]) with a large effect size (η2=.34), which was maintained at 3-month follow-up. Care partners showed no significant change over time. CONCLUSIONS: This study provides preliminary evidence that ReStoreD improves resilience in persons with stroke. More research is needed to address resilience in care partners. These findings represent a promising first step to address the mental health needs in this population.


Assuntos
Resiliência Psicológica , Acidente Vascular Cerebral , Humanos , Estudos Prospectivos , Acidente Vascular Cerebral/psicologia , Adaptação Psicológica , Saúde Mental
6.
J Health Commun ; 28(5): 292-301, 2023 05 04.
Artigo em Inglês | MEDLINE | ID: mdl-37078713

RESUMO

Patients with hereditary cancer predisposition syndromes have a high likelihood of passing germline mutations to future offspring. Patients at risk for inherited cancer may not have started and/or completed building their families; thus, they must decide about having children and consider the possibility of passing on their germline mutation. Utilizing the Shared Decision Making (SDM) Model, this study explores family building decision-making communication processes in opposite-sex couples with inherited cancer risk (ICR). Fifteen couples completed two recorded, analogue discussions and dyadic interviews at two time points. Participants were recruited through social media and snowball sampling. The constant comparison method was utilized to thematically analyze the data. When couples discussed family building options (FBOs), several themes were identified: FBO risks, FBO considerations, genetic-related FBO logistics, and life FBOs logistics. When deliberating family building decisions, couples shared easy conversational topics (e.g. FBO options and potential child's cancer risk due to a genetic variant) and difficult/conflict-inducing topics (e.g. preparing for possibilities, parenting, emotions, finances, and timing). Last, couples self-reported primary and secondary FBOs. The findings of this study capture couples' decision-making communication process while considering their experiences. Clinicians and practitioners can utilize these findings to support couples' family building decisions considering their ICR.


Assuntos
Tomada de Decisão Compartilhada , Neoplasias , Criança , Humanos , Tomada de Decisões , Família , Neoplasias/genética
7.
J Psychosoc Oncol ; 41(2): 137-149, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35486591

RESUMO

Examine the impact of the primary-support person (PSP) role on advanced cancer patient and spouse caregiver psychological well-being, above and beyond the effects of relationship satisfaction.Secondary analysis of cross-sectional questionnaire data.88 advanced cancer patient/spouse-caregiver dyads.Patients and caregivers independently completed measures assessing depression, anxiety, perceived stress, and relationship satisfaction, and identified their PSP. Patient and caregiver psychological well-being outcomes were regressed on patient and caregiver PSP variables in an actor-partner interdependence model.Half of patients identified their caregiver as PSP; 9% of caregivers identified their patient as PSP. When caregivers identified their patient as PSP, the patient reported better outcomes. No associations were seen for patient identification of caregiver as PSP or caregiver well-being.Clinicians can encourage patients to find ways to continue to focus on their relationship with the caregiver and help caregivers connect with other sources of support.


Assuntos
Cuidadores , Neoplasias , Humanos , Cuidadores/psicologia , Bem-Estar Psicológico , Estudos Transversais , Qualidade de Vida/psicologia , Neoplasias/psicologia , Depressão/psicologia , Estresse Psicológico/psicologia
8.
Palliat Support Care ; 21(1): 3-11, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35586976

RESUMO

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.


Assuntos
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 Paciente
9.
Psychooncology ; 31(2): 316-325, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34510631

RESUMO

OBJECTIVE: End-of-life caregiving is associated with poorer mental health compared with other caregiving. The objective of this study was to examine the association between contextual characteristics and appraisal factors on family caregivers' mental health and well-being. METHODS: Family hospice caregivers were recruited across four states using a non-probabilistic sampling approach. This study analyzed contextual (demographic, caregiving, economic) and appraisal factors (Medical Outcomes Study Social Support Survey, Zarit Burden Interview) on caregivers' anxiety and depression (Hospital Anxiety and Depression scale, and positive affect and well-being (Positive Affect and Well-being Scale). Hierarchical linear regression models were generated in SPSS version 24. RESULTS: Data from 102 family caregivers were analyzed. On average, participants were 58.93 years of age (SD = 14.24), mostly female (72.55%), spouses/partners (51.96%), and non-Hispanic White (78.43%). Most (75.49%) described their financial situation as comfortable or more than adequate. Younger age (B = -0.11, 95% CI = -0.18 to -0.05) and increased caregiving burden (B = 0.18, 95% CI = 0.09 to 0.27) were associated with increased anxiety, while lower perceived financial adequacy (B = -1.19, 95% CI = -2.07 to -0.32), lower social support (B = -0.04, 95% CI = -0.06 to -0.01), and increased caregiving burden (B = 0.15, 95% CI = 0.08-0.22) were associated with worsened depression. Greater social support (B = 0.10, 95% CI = 0.05-0.14) and lower caregiving burden (B = -0.19, 95% CI = -0.32 to -0.07) were associated with greater positive affect and well-being. CONCLUSIONS: Findings suggest significant impact of contextual factors on mental health and well-being, and support the need for holistic assessment of hospice caregivers' wellbeing and programs and policies providing social services and economic support to caregivers.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Ansiedade/epidemiologia , Transtornos de Ansiedade , Cuidadores/psicologia , Família , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino
10.
Ann Behav Med ; 56(3): 270-281, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-34228090

RESUMO

BACKGROUND: Resilience is dynamic and influenced by internal and external factors. In persons with chronic illness and/or disability, resilience is viewed as the ability to adapt to new life circumstances. Existing models of resilience typically focus on the absence of deficit and pathology in the individual, overlooking resources, well-being, and broader social impacts. Our proposed novel Relational, Intrapersonal, Social and Environmental (RISE) Model of resilience incorporates and describes the interconnection and influence of constructs that impact resilience and affect the quality of life. PURPOSE: The purpose of this study is to examine the fit of the RISE Model against original interview data obtained from persons with stroke and their partners. METHODS: This study is a secondary analysis of qualitative data collected from post-intervention interviews that were part of an intervention pilot study designed to promote resilience in couples coping with stroke. Interviews were coded to examine relationships between RISE Model constructs. RESULTS: The study included 36 interviews from 18 cohabitating couples; mean participant age was 53.33 years (SD ±14.70). Examples of each construct within the RISE Model appeared in transcribed interviews and common patterns of co-occurring constructs were identified. CONCLUSION: The constructs within the RISE Model were supported by the interviews. The impact of disability does not remain confined to a single individual and instead branches out into the broader social context, including close interpersonal relationships. A deeper understanding of resilience and its relationship with intrapersonal, interpersonal and socio-ecological constructs would add value to our understanding and fostering of resilience in persons with disabilities and/or chronic illness. CLINICAL TRIAL INFORMATION: NCT03335358.


Assuntos
Pessoas com Deficiência , Resiliência Psicológica , Adaptação Psicológica , Adulto , Idoso , Humanos , Relações Interpessoais , Pessoa de Meia-Idade , Projetos Piloto , Qualidade de Vida
11.
Ann Behav Med ; 56(4): 405-413, 2022 04 02.
Artigo em Inglês | MEDLINE | ID: mdl-34244701

RESUMO

BACKGROUND: Cancer impacts both patients and their family caregivers. Evidence suggests that caregiving stress, including the strain of taking on a new role, can elevate the risk of numerous health conditions, including high blood pressure (BP). However, the caregiver's psychosocial experiences, including their interpersonal relationship with the patient, may buffer some of the negative physiological consequences of caregiving. PURPOSE: To examine the influence of psychosocial contextual variables on caregiver ambulatory BP. METHODS: Participants were 81 spouse-caregivers of patients with advanced gastrointestinal or thoracic cancer. For an entire day at home with the patient, caregivers wore an ambulatory BP monitor that took readings at random intervals. Immediately after each BP reading, caregivers reported on physical circumstances (e.g., posture, activity) and psychosocial experiences since the last BP measurement, including affect, caregiver and patient disclosure, and role perceptions (i.e., feeling more like a spouse vs. caregiver). Multilevel modeling was used to examine concurrent and lagged effects of psychosocial variables on systolic and diastolic BP, controlling for momentary posture, activity, negative affect, and time. RESULTS: Feeling more like a caregiver (vs. spouse) was associated with lower systolic BP at the same time point. Patient disclosure to the caregiver since the previous BP reading was associated with higher diastolic BP. No lagged effects were statistically significant. CONCLUSIONS: Caregivers' psychosocial experiences can have immediate physiological effects. Future research should examine possible cognitive and behavioral mechanisms of these effects, as well as longer-term effects of caregiver role perceptions and patient disclosure on caregiver psychological and physical health.


Assuntos
Cuidadores , Neoplasias , Pressão Sanguínea , Monitorização Ambulatorial da Pressão Arterial , Cuidadores/psicologia , Comunicação , Humanos , Neoplasias/psicologia , Estresse Psicológico/psicologia
12.
Ann Behav Med ; 56(11): 1110-1115, 2022 11 05.
Artigo em Inglês | MEDLINE | ID: mdl-35759312

RESUMO

BACKGROUND: Sleep disturbance is common and distressing among cancer survivors. Black breast cancer survivors (BBCS) suffer disproportionately from sleep disturbance, yet there is limited research on how to address this issue. PURPOSE: This study aimed to understand the multifaceted experiences of sleep disturbance among BBCS and how to culturally target a mobile health (mHealth) intervention to improve sleep outcomes in BBCS. METHODS: Semi-structured interviews were conducted in a purposive sample of 10 BBCS. Interviews were audio-recorded, transcribed, and coded for key barriers to sleep and potential solutions to incorporate into behavioral interventions using NVivo 12. Inductive applied thematic analysis techniques were employed to identify emergent themes. RESULTS: Ten BBCS (mean age = 54, SD = 10) described their experiences of sleep disturbance with themes including: (1) barriers to quality sleep (e.g., cancer worry, personal responsibilities), (2) psychosocial impacts of sleep disturbance (e.g., fatigue, distress), and (3) commonly used strategies to improve sleep. The second section discusses suggestions for developing mHealth interventions to improve sleep for BBCS including: (1) feedback on an existing mHealth intervention and (2) intervention topics suggested by BBCS. CONCLUSIONS: Our findings highlight the challenges associated with sleep disturbance in BBCS. Participants report culturally targeted mHealth interventions are needed for BBCS who experience chronic sleep disturbance that affects their overall quality of life. These interventions should address coping with sleep-related issues relevant to many breast cancer survivors and BBCS (e.g., sexual intimacy, fear of cancer recurrence) and should incorporate intervention strategies acceptable to BBCS (e.g., prayer, meditation).


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Meditação , Transtornos do Sono-Vigília , Humanos , Pessoa de Meia-Idade , Feminino , Sobreviventes de Câncer/psicologia , Neoplasias da Mama/complicações , Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Recidiva Local de Neoplasia , Transtornos do Sono-Vigília/terapia , Transtornos do Sono-Vigília/complicações , Sono
13.
Support Care Cancer ; 30(6): 5361-5370, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35290512

RESUMO

Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.


Assuntos
COVID-19 , Cuidadores , Cuidadores/psicologia , Humanos , Estudos Longitudinais , Oncologia , Apoio Social
14.
Support Care Cancer ; 30(12): 10263-10272, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36207640

RESUMO

Patient navigation is increasingly common in cancer care. While navigation programs often involve informal family caregivers, few navigation interventions specifically target the family caregiver. We developed the eSNAP and Caregiver Navigator Intervention to help cancer family caregivers identify and capitalize on informal and formal social support resources. While the skill set for patient navigators may be adequate for supporting caregivers, other skills and areas of knowledge expertise are needed. In addition, sparse documentation of navigator training best practices creates further challenges for dissemination and implementation. Our goal is to describe the education and training of cancer caregiver navigators within key competencies used to prepare and support navigators to deliver our manualized intervention. Nationally recognized navigation competencies, related to developing a sensitivity to ethical, cultural, and professional issues, knowledge development, skills development, and practice-based learning, were identified and adapted. Performance goals were identified within each competency. Training activities were selected to support competency development. Based on adult learning theories, we emphasize multiple learning strategies, including experiential learning and critical reflection. Two caregiver navigators engaged in initial training between December, 2019 and February, 2020. Initial training was supervised by study leadership, who coordinated with experts and stakeholders. Navigators completed initial training. We describe lessons learned. To ensure that navigators are well-equipped to provide effective services, evidence-based training programs that include navigation and protocol-specific competencies are needed. Given the lack of detailed training programs in the literature, we created a flexible, multimodal learning approach that other teams may adopt.


Assuntos
Neoplasias , Navegação de Pacientes , Adulto , Humanos , Cuidadores , Neoplasias/terapia , Apoio Social
15.
Support Care Cancer ; 30(2): 1365-1375, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34510238

RESUMO

BACKGROUND: Glioblastoma is an incurable disease with a poor prognosis. For caregivers of people with glioblastoma, the burden of care can be high. Patients often present with different clinical characteristics, which may impact caregiver burden in different ways. This study aimed to evaluate associations between patient clinical characteristics and caregiver burden/quality of life (QoL). METHODS: Caregiver-patient dyads were enrolled at 7 academic cancer centers in the United States. Eligible caregiver participants were self-reported as the primary caregiver of an adult living with glioblastoma and completed a caregiver burden survey. Eligible patients were age ≥ 18 years at glioblastoma diagnosis and alive when their respective caregiver entered the study, with the presence of cognitive dysfunction confirmed by the caregiver. Data were analyzed with descriptive statistics and multivariable analyses. RESULTS: The final cohort included 167 dyads. Poor patient performance status resulted in patient difficulty with mental tasks, more caregiving tasks, and increased caregiving time. Language problems were reported in patients with left-sided lesions. Patient confusion was negatively associated with all caregiver domains: emotional health, social health, general health, ability to work, confidence in finances, and overall QoL. Better caregiver QoL was observed in patients with frontal lobe lesions versus non-frontal lobe lesions. CONCLUSION: This study reinforced that patient performance status is a critical clinical factor that significantly affects caregiver burden, caregiving tasks, and caregiver time. Additionally, patient confusion affects multiple facets of caregiver burden/QoL. These results could be used to support guided intervention for caregiver support, customized to the patient experience.


Assuntos
Glioblastoma , Qualidade de Vida , Adolescente , Adulto , Sobrecarga do Cuidador , Cuidadores , Efeitos Psicossociais da Doença , Glioblastoma/terapia , Humanos , Inquéritos e Questionários
16.
J Behav Med ; 45(6): 935-946, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35986871

RESUMO

We aimed to examine the psychosocial well-being in the pancreas cancer patient-caregiver dyad, and determine patient and caregiver characteristics that predict caregiver distress. This was a cross-sectional, observational study. Demographics and caregiving characteristics were gathered from patients and caregivers. Caregivers completed validated instruments investigating anxiety, depression, perceived stress and caregiver burden. Over a period of eleven months, 128 patient-caregiver dyads were enrolled. Patient and caregiver distress scores were not associated with patient clinical disease burden. Patient distress was a significant predictor of concurrent caregiver distress, anxiety, depression, and perceived burden. Younger caregivers were also associated with higher caregiver anxiety and perceived burden. Additionally, number of caregiving activities and caregiver overall health status were predictors of concurrent caregiver depression and perceived stress. Certain pancreatic cancer patient and caregiver variables may negatively impact the well-being of caregivers. Future efforts should focus on development and implementation of comprehensive caregiver support programs for those at risk for psychosocial distress.


Assuntos
Cuidadores , Neoplasias Pancreáticas , Humanos , Estudos Transversais , Ansiedade , Neoplasias Pancreáticas
17.
J Cancer Educ ; 37(6): 1634-1640, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-33783762

RESUMO

Informal family caregivers are critically important for patient care throughout the cancer care trajectory. Family-centered care, which seeks to integrate family members as experts, is a framework that values partnerships with family members and can benefit both the physical and psychosocial health of patients. However, little standardization or system-level implementation of family-centered care models to integrate and support family caregivers have emerged in adult oncology care settings in the USA. To better understand potential barriers and facilitators to the integration and support of family caregivers in cancer care settings, we conducted semi-structured interviews with informal family caregivers (n = 12) and members of the cancer center leadership team and health care providers (n = 11) at an NCI-designated Comprehensive Cancer Center. We frame our results using the social ecological model and identified facilitators and barriers at the individual, interpersonal, and system level. While caregivers and team members were able to identify facilitators and barriers at the individual (i.e., caregivers are motivated to learn, but overwhelmed and focused only on the patient) and interpersonal levels (i.e., relationships are a valuable resource, but communication is sometimes challenging), team members were more likely to identify system-level barriers (i.e., constraints within the larger healthcare structure). To implement family-centered care in cancer settings, it is incumbent on the healthcare system to pursue standardization of communication, programs that facilitate family integration and support, and advocate for policy change. Barriers must be addressed at multiple levels to provide inclusive and supportive environments for all patients and their families.


Assuntos
Cuidadores , Neoplasias , Adulto , Humanos , Cuidadores/psicologia , Pesquisa Qualitativa , Família/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Comunicação
18.
Cancer Causes Control ; 32(10): 1085-1094, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34132914

RESUMO

BACKGROUND: Racial and ethnic minorities experience well-documented disparities across the cancer trajectory. However, factors underlying these disparities may vary regionally. The Health Belief Model (HBM) was developed to explain and predict health-related prevention and early detection behaviors, particularly uptake of health services. Our goal was to use the HBM to guide an exploration of factors that contribute to racial/ethnic health disparities in the catchment area of a large National Cancer Institute-designated Comprehensive Cancer Center in the Southeastern United States. METHODS: We conducted a secondary analysis of data collected by the cancer center for its triennial Community Health Needs Assessment, which sampled adults from the center's 15-county catchment area. White non-Hispanics (WNHs; n = 887), Black non-Hispanics (BNHs; n = 78), Hispanics/Latinxs (H/Ls; n = 185), and those identifying as another race/ethnicity ("Others"; n = 39) were compared across key HBM variables, including demographic/psychosocial information, perceived benefits and barriers to preventive health behaviors, risk perception, and health behavior outcomes. RESULTS: Controlling for annual household income, relationship status, and age (for certain screening behaviors), significant differences were seen in information-seeking behaviors, risk perception, community attributes, discrimination, and distress. Non-WNH groups reported worse community attributes, higher everyday discrimination, lower health literacy, less confidence in their ability to get health information, and lower perceived risk of cancer. CONCLUSION: This analysis presents a better understanding of how HBM factors may influence health disparities in the cancer center's catchment area. Results describe the needs of community members from racial and ethnic minority groups, which will inform future research, education, outreach, and service activities.


Assuntos
Etnicidade , Neoplasias , Adulto , Modelo de Crenças de Saúde , Hispânico ou Latino , Humanos , Grupos Minoritários , National Cancer Institute (U.S.) , Neoplasias/epidemiologia , Estados Unidos/epidemiologia
19.
Psychooncology ; 30(8): 1294-1301, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33739548

RESUMO

OBJECTIVE: Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T-cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment-related distress in caregivers in the first 6 months after CAR T-cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. METHODS: Caregivers completed measures examining QOL and burden before patients' CAR T-cell therapy and at days 90 and 180. Treatment-related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. RESULTS: A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p < .01). Conversely, anxiety worsened over time (p < .01). Caregiver burden and treatment-related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p < .01). Worse caregiver treatment-related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (ps < 0.01). CONCLUSIONS: Some CAR T-cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T-cell therapy caregivers.


Assuntos
Qualidade de Vida , Receptores de Antígenos Quiméricos , Cuidadores , Terapia Baseada em Transplante de Células e Tecidos , Depressão/terapia , Feminino , Humanos , Imunoterapia Adotiva , Masculino , Pessoa de Meia-Idade
20.
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
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