RESUMO
PURPOSE: To illuminate the lived experience of resilience in rural-dwelling North Carolinian cancer caregivers at the intersection of cancer and the COVID-19 pandemic. METHODS: In spring, 2020, we recruited self-identified primary caregivers (CGs) for a relative/friend with cancer living in a rural area. We conducted cross-sectional semi-structured interviews and then thematically analyzed transcripts to identify and categorize instances of stressors and benefit-finding. RESULTS: Of the 24 participants, 29% were < 50 years old, 42% identified as non-Hispanic Black, 75% were women, and 58% were spousal CGs. Most care recipients (CRs) had stage IV cancer (n = 20) and cancer types varied. Participants played a variety of roles in caregiving and experienced stressors related to caregiving demands (e.g., conflicts with other responsibilities), rurality (e.g., transportation), and the COVID-19 pandemic (e.g., new visitor policy at hospital). Despite stressful experiences, participants also identified many positive aspects of their caregiving. Five domains of benefit-finding were identified: appreciation (e.g., gratitude toward their ability to care for CRs), CG-CR dyad relationship dynamics (e.g., increased closeness), interpersonal relationship dynamics (e.g., perceived peer support), faith (e.g., ability to cope through praying), and personal growth (e.g., new skills learned from caregiving). CONCLUSION: Rural-dwelling cancer caregivers from mixed sociodemographic backgrounds identified a diverse range of benefits from caregiving, despite experiencing multiple stressors, including emergent stressors from the COVID-19 pandemic. Healthcare delivery serving rural communities may consider expanding transportation assistance and boosting benefit-finding to ameliorate stress in cancer caregivers.
Assuntos
COVID-19 , Neoplasias , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Cuidadores , População Rural , Estudos Transversais , PandemiasRESUMO
BACKGROUND: The social needs of rural families facing cancer warrant investigation to inform psychosocial care planning and policy development. METHODS: Using purposive sampling, we interviewed 24 rural caregivers and 17 hospital staff from an academic cancer center in the U.S. South. Social needs were defined as the support needed to effectively provide informal caregiving across economic, physical, interpersonal, and service domains. We used the framework method to code and synthesize findings. FINDINGS: Caregiver economic and physical needs were interconnected and most pressing, including common examples of distance to care and transportation barriers. Caregivers desired additional support from the health system, insurance providers, and community resources. Staff identified similar need patterns and gaps in health system capacity. CONCLUSIONS: Rural cancer caregivers experience multiple unmet social needs. Supportive interventions for this population will benefit from flexible implementation and multilevel, multisector approaches. In particular, interventions that address financial hardship and limited internet access are needed.
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Cuidadores , Neoplasias , Humanos , Neoplasias/terapia , Recursos Humanos em Hospital , Projetos de Pesquisa , Apoio Social , População RuralRESUMO
PURPOSE: Although parents with cancer report that talking with their children about cancer and dying is distressing, accessible support is rare. We assessed the feasibility, acceptability, and preliminary effects of Families Addressing Cancer Together (FACT), a web-based, tailored psychosocial intervention to help parents talk about their cancer with their children. METHODS: This pilot study used a pre-posttest design. Eligible participants were parents with new or metastatic solid tumors who had minor (ages 3-18) children. Participants who completed baseline assessments received online access to FACT. We assessed feasibility through enrollment and retention rates and reasons for study refusal. Acceptability was evaluated by satisfaction ratings. We examined participants' selection of intervention content and preliminary effects on communication self-efficacy and other psychosocial outcomes (depression and anxiety symptoms, health-related quality of life, family functioning) at 2- and 12-week post-intervention. RESULTS: Of 68 parents we approached, 53 (78%) agreed to participate. Forty-six parents completed baseline assessments and received the FACT intervention. Of the 46 participants, 35 (76%) completed 2-week assessments, and 25 (54%) completed 12-week assessments. Parents reported that FACT was helpful (90%), relevant (95%), and easy to understand (100%). Parents' psychosocial outcomes did not significantly improve post-intervention, but parents endorsed less worry about talking with their child (46% vs. 37%) and reductions in the number of communication concerns (3.4 to 1.8). CONCLUSION: The FACT intervention was feasible, acceptable, and has potential to address communication concerns of parents with cancer. A randomized trial is needed to test its efficacy in improving psychological and parenting outcomes. TRIAL REGISTRATION: This study was IRB-approved and registered with clinicaltrials.gov (NCT04342871).
Assuntos
Intervenção Baseada em Internet , Neoplasias , Adolescente , Criança , Pré-Escolar , Estudos de Viabilidade , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Poder Familiar , Pais/psicologia , Projetos Piloto , Intervenção Psicossocial , Qualidade de VidaRESUMO
PURPOSE: Cognitive impairment is common and consequential in patients with cancer who undergo allogeneic hematopoietic stem cell transplantation (HSCT). However, there is no standard of care for evaluating cognition in patients prior to or after receiving HSCT, and it is not known which patients are at highest risk for cognitive impairment. The objectives of this study were to describe cognitive function in patients prior to allogeneic HSCT and identify demographic, disease-related, and psychosocial factors associated with cognitive function. METHODS: Prior to HSCT, participants completed the Montreal Cognitive Assessment (MoCA). We assessed bivariable associations between continuous MoCA scores and demographic, disease-related, and psychosocial variables using linear regression. Variables significant at the p < 0.2 level were adjusted for age, sex, and years of education in multiple linear regression analyses. RESULTS: Over 50% of participants demonstrated evidence of cognitive impairment (MoCA < 26) prior to transplantation. When adjusted for demographic variables, two characteristics were significantly associated with worse cognitive function: the hematopoietic cell transplantation-comorbidity index score (p = 0.01) and history of alcohol or substance abuse (p = 0.02). Pre-HSCT cancer and cancer treatment-specific variables were not associated with cognitive function. CONCLUSION: Cognitive impairment is common in patients scheduled to receive HSCT. Pre-transplantation evaluation of medical comorbidities and history of substance abuse may be important in identifying patients at risk for cognitive impairment. Further research characterizing the trajectory and impact of cognitive impairment on patient symptom burden and function may help improve outcomes.
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Cognição/fisiologia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Condicionamento Pré-Transplante/efeitos adversos , Transplante Homólogo/efeitos adversos , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Grieving adults raising parentally-bereaved minor children experience persistently elevated symptoms of depression and grief. However, the factors associated with their mental health outcomes are not well understood. AIM: To investigate the psychosocial and demographic characteristics associated with grief distress and depressive symptom severity in bereaved adults with minor children. DESIGN: Cross-sectional, web-based survey. SETTING/PARTICIPANTS: Eight hundred forty-five bereaved adults raising minor (age <18 years) children who had experienced the death of a co-parent. Primary outcomes were grief distress (Prolonged Grief Disorder-13), depressive symptoms (Patient-Reported Outcomes Measurement Information System-Depression), and widowed parenting self-efficacy (WPSES). RESULTS: Mean grief scores were 33.5; mean depression scores were 58.3. Among the 690 individuals more than 6 months bereaved, 132 (19.3%) met criteria for prolonged grief disorder. In adjusted models, participants reporting higher grief scores were more recently bereaved, identified as mothers, non-Caucasian, had lower education and income, and had not anticipated their co-parent's death. The statistical modeling results for depression scores were similar to grief scores except that depression was not associated with anticipation of co-parent death. Parents reporting lower WPSES scores had higher grief and depression scores. Retrospective assessments of more intense parenting worries at the time of co-parent death were also associated with higher grief and depression scores. CONCLUSIONS: For bereaved adults with minor children, unanticipated co-parent death was linked with higher grief distress but not symptoms of depression. Addressing parenting concerns may represent a common pathway for improving the mental health of parentally-bereaved families.
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Luto , Poder Familiar , Adolescente , Adulto , Criança , Estudos Transversais , Depressão , Pesar , Humanos , Transtorno do Luto Prolongado , Estudos RetrospectivosRESUMO
OBJECTIVE: Advanced cancer patients who are parents of minor children experience heightened psychosocial distress. Oncology social workers (OSWs) are essential providers of psychosocial support to parents with advanced cancer. Yet, little is known about the experiences and approaches of OSWs in addressing these patients' unique needs. The purpose of this study was to characterize the attitudes, practice behaviors, and training experiences of OSWs who provide psychosocial care for advanced cancer patients with minor children. METHOD: Forty-one OSWs participated in a cross-sectional survey addressing multiple facets of their psychosocial care for parents with advanced cancer. The five assessed domains of psychosocial support were communication support, emotional support, household support, illness and treatment decision-making support, and end-of-life planning. RESULTS: Participants reported greatest confidence in counseling patients on communication with children about illness and providing support to co-parents about parenting concerns. OSWs reported less confidence in counseling parents on end-of-life issues and assisting families with non-traditional household structures. The majority of participants reported needing more time in their clinical practice to sufficiently address parents' psychosocial needs. Nearly 90% of participants were interested in receiving further training on the care of parents with advanced cancer. SIGNIFICANCE OF RESULTS: To improve the care of parents with advanced cancer, it is critical to understand how the psychosocial oncology workforce perceives its clinical practice needs. Study findings suggest an opportunity for enhanced training, particularly with respect to end-of-life needs and in response to the changing household structure of American families.
Assuntos
Necessidades e Demandas de Serviços de Saúde , Neoplasias , Pais , Assistentes Sociais , Atitude , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Neoplasias/terapia , Relações Pais-FilhoRESUMO
BACKGROUND: Patients with cancer frequently experience neuropsychiatric symptoms due to their medical illness or its treatment. In recent decades, psychiatrists have become increasingly involved in the care of patients with cancer. However, psychiatrists may be less familiar with hematopoietic stem cell transplantation (HSCT), a distinct cancer treatment modality associated with multiple neuropsychiatric sequelae. OBJECTIVE: To provide an overview of HSCT, and describe the prevalence, impact, risk factors, and suggested management of psychiatric consequences of HSCT. METHODS: We performed literature searches in PubMed and PsychInfo to identify articles describing neuropsychiatric symptoms, including depression, anxiety, distress, post-traumatic stress disorder, delirium and cognitive impairment, resulting from HSCT in adults. Those articles most relevant to this manuscript were included. RESULTS: Psychiatrists may be involved in the treatment of patients before, during, or after inpatient hospitalization for HSCT. Each phase of treatment introduces unique stressors that may lead to or exacerbate psychiatric disorders. Appropriate management requires evaluation of HSCT-related medications, an understanding of the impact of complications from HSCT, and consideration of how the patient's underlying medical condition should influence psychiatric recommendations. CONCLUSION: To optimize patient outcomes, consulting psychiatrists should be familiar with the basic principles of HSCT, and the neuropsychiatric sequelae that may result from treatment. Further research is needed to identify strategies to manage psychiatric complications in this unique population.
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Transplante de Células-Tronco Hematopoéticas/psicologia , Transtornos Mentais/etiologia , Ansiedade/etiologia , Ansiedade/terapia , Depressão/etiologia , Depressão/terapia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Transtornos Mentais/terapia , Estresse Psicológico/etiologia , Estresse Psicológico/terapiaRESUMO
PURPOSE: Parents with cancer have unique and often under-recognized psychological distress about the impact of their illness on their children. Relatively little is known about how parenting concerns may differ among patients by cancer stage. METHODS: This is a secondary data analysis of 203 adults with cancer who had children < 18 years old from two geographically distinct areas. We used an analysis of covariance to estimate the mean differences in PCQ, depression symptom severity and anxiety symptom severity (Hospital Anxiety and Depression Scale, HADS) scores between participants with metastatic and non-metastatic disease, and Pearson's correlation coefficients to assess associations between HADS and PCQ scores by cancer stage. RESULTS: Seventy-two percent of participants (n = 146) had metastatic solid tumor cancer. In adjusted analyses, mean PCQ scores did not significantly differ between parents with metastatic and non-metastatic disease (2.0 vs. 2.2, p = 0.06). Differences in mean PCQ scores were driven by a single question concerning the impact of death on children (2.3 vs. 2.9, p = 0.004). Mean HADS scores did not significantly differ between groups, although PCQ scores explained a greater amount of variance in HADS scores for the metastatic group as compared to the non-metastatic group. CONCLUSIONS: With the exception of concerns about death, intensity of parenting concerns, as measured by the PCQ, was similar between parents with metastatic and non-metastatic cancer. However, parenting concerns may be more strongly linked to overall psychological distress in patients with metastatic disease. Further research is needed to clarify how parenting concerns uniquely relate to advanced stage illness.
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Neoplasias/psicologia , Poder Familiar/psicologia , Pais/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
Purpose: A parental advanced cancer diagnosis can have profound and lasting impact on family functioning. We used an adapted version of the Family Management Style Framework (FMSF) to identify and describe patterns of family management in parental advanced cancer. Design: This is a secondary analysis of data from a cross-sectional, mixed-methods study. Forty-two adults participated in semi-structured, in-depth interviews about their experiences as a parent with advanced cancer and completed measures of psychosocial functioning. We analyzed interviews using codes derived from the FMSF and used directed content analysis to identify themes reflected in the coded data. Findings: We identified five distinct patterns of family management in parental advanced cancer: (1) Equipped and Optimistic; (2) Equipped and Pragmatic; (3) Discouraged and Struggling; (4) Apprehensive and Passive; and (5) Discouraged and Conflicted. Conclusions: The FMSF was a useful framework for differentiating and understanding underlying patterns of family response to parental advanced cancer.
Assuntos
Família/psicologia , Neoplasias/patologia , Neoplasias/psicologia , Pais/psicologia , Adaptação Psicológica , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Psicológicos , Estadiamento de Neoplasias , Pesquisa QualitativaRESUMO
BACKGROUND: Cancer is a leading cause of death among women of parenting age in the United States. Women living with advanced or incurable cancer who have dependent children experience high rates of depression and anxiety as well as unique parenting challenges. To the authors' knowledge, few studies to date have examined the parenting factors associated with health-related quality of life (HRQOL) in women with advanced cancer. METHODS: The authors conducted a cross-sectional, Web-based survey of the psychosocial concerns of 224 women with a tumor-node-metastasis staging system of the AJCC stage IV solid tumor malignancy who had at least 1 child aged <18 years. Participants completed validated measures of HRQOL (Functional Assessment of Cancer Therapy-General [FACT-G]); depression and anxiety symptom severity; functional status; parenting concerns; and investigator-designed questions to assess demographic, communication, and parenting characteristics. Multiple linear regression models were estimated to identify factors associated with FACT-G total and subscale scores. RESULTS: The mean FACT-G score was 66 (standard deviation, 16). The mean Emotional Well-Being subscale scores were particularly low (13; standard deviation, 5). In multivariable linear regression models, parenting variables explained nearly 40% of the HRQOL model variance. In the fully adjusted model, parenting concerns and the absence of parental prognostic communication with children both were found to be significantly associated with HRQOL scores. For each 1-point increase in parenting concern severity, FACT-G scores decreased by 4 points (P = .003). CONCLUSIONS: Women with metastatic cancer who are parents of dependent children are at risk of high psychological distress and low HRQOL. Parenting factors may have a negative influence on HRQOL in this patient population. Cancer 2018;124:2629-36. © 2018 American Cancer Society.
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Mães/psicologia , Neoplasias/psicologia , Poder Familiar/psicologia , Qualidade de Vida , Estresse Psicológico/diagnóstico , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/psicologia , Criança , Estudos Transversais , Depressão/diagnóstico , Depressão/psicologia , Feminino , Humanos , Avaliação de Estado de Karnofsky , Pessoa de Meia-Idade , Mães/estatística & dados numéricos , Neoplasias/diagnóstico , Neoplasias/patologia , Autorrelato/estatística & dados numéricos , Estresse Psicológico/psicologiaRESUMO
OBJECTIVE: Previous studies have suggested that suicide rates are elevated among cancer patients relative to the general population. In this analysis, we comprehensively evaluated characteristics associated with higher suicide rates among patients with cancers of the digestive system. METHODS: Using the United States Surveillance, Epidemiology, and End Results database, we identified all patients diagnosed with digestive system cancers during 2000 to 2014. Patients were classified as having died of suicide if their cause of death in Surveillance, Epidemiology, and End Results was listed as "suicide and self-inflicted injury." Suicide rates were compared to age-, sex-, and race-adjusted rates in the general population. RESULTS: A total of 881 suicides were identified among 856 293 patients diagnosed with digestive system cancers. The suicide rate in this population was 32.8 per 100 000 person-years and was nearly twice that in the general population (standardized mortality ratio [SMR] = 1.91; 95% CI, 1.79-2.04). Suicide rates were significantly elevated for all cancer sites but were highest for esophageal (SMR = 5.03), pancreatic (SMR = 5.28), stomach (SMR = 2.84), and liver (SMR = 2.14) cancers. Standardized mortality ratios for suicide were highest within the first 5 years of diagnosis and increased with age at diagnosis for all sites except colon and stomach. CONCLUSIONS: Patients with cancers of the digestive system have a higher incidence of suicide than the general population. Suicide rates among esophageal and pancreatic cancer patients are more than 5 times general population rates. The involvement of psychiatrists and other mental health professionals may be a critical component of cancer care for these high-risk patient subgroups.
Assuntos
Neoplasias do Sistema Digestório/mortalidade , Suicídio/estatística & dados numéricos , Adulto , Distribuição por Idade , Idoso , Causas de Morte , Neoplasias do Sistema Digestório/psicologia , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Programa de SEER , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Wernicke encephalopathy is a common neuropsychiatric syndrome due to thiamine deficiency. There is no consensus regarding thiamine dosing when Wernicke encephalopathy is suspected. A longstanding dosing strategy for Wernicke encephalopathy is 100mg daily, yet updated clinical guidelines suggest using high-dose intravenous (HDIV) thiamine. OBJECTIVE: To describe thiamine prescribing practices at a large, public academic hospital and investigate clinical characteristics and outcomes associated with HDIV thiamine in patients with encephalopathy who received IV thiamine. METHODS: Electronic medical records of hospitalized patients who received thiamine between 4/4/2014 and 11/1/2015 were reviewed. Chi-square tests, Wilcoxon Rank Sum tests, and logistic regression were used to compare clinical variables in patients with encephalopathy who received HDIV thiamine (≥ 200mg twice daily) vs lower doses of IV thiamine. RESULTS: Among the total of 5236 thiamine orders, 29% (n = 1531) were IV; 10% (n = 150) of IV orders met HDIV criteria. In patients with encephalopathy who received IV thiamine (n = 432), HDIV thiamine was administered to 20% (n = 86) and only 2.1% (n = 9) received dosing consistent with Royal College of Physicians guidelines. In bivariable analyses, HDIV thiamine was associated with surgical services (p = 0.001), psychiatric consultation (p < 0.001), and decreased mortality (p = 0.004). In multivariable models, the association between HDIV thiamine and decreased in-hospital mortality did not meet statistical significance (p = 0.061). CONCLUSIONS: In a large, public academic hospital, guideline-concordant thiamine supplementation is rare and HDIV thiamine is infrequently prescribed to patients with encephalopathy. Further studies are needed to confirm the possible benefits of HDIV thiamine for patients with suspected thiamine-deficient encephalopathy.
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Deficiência de Tiamina/complicações , Deficiência de Tiamina/tratamento farmacológico , Tiamina/uso terapêutico , Complexo Vitamínico B/uso terapêutico , Encefalopatia de Wernicke/complicações , Encefalopatia de Wernicke/tratamento farmacológico , Administração Intravenosa , Estudos de Coortes , Relação Dose-Resposta a Droga , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Tiamina/administração & dosagem , Resultado do Tratamento , Complexo Vitamínico B/administração & dosagemRESUMO
BACKGROUND: Young adults with cancer experience disruptions in their normal developmental trajectories and commonly experience psychologic distress related to their diagnoses. Young women with metastatic breast cancer (MBC) are at particular risk of adverse mental health outcomes. OBJECTIVE: We sought to determine the prevalence of and factors associated with anxiety and depression symptoms in young women with newly diagnosed de novo MBC. METHODS: A total of 54 women with newly diagnosed de novo MBC were identified from an ongoing, prospective, multicenter cohort of women diagnosed with breast cancer at age <40. Depression and anxiety symptoms were assessed using the Hospital Anxiety and Depression Scale (HADS). Items assessing socio-demographics, physical symptom burden, social support, and disease and treatment history, with complementary medical record review, were used to assess variables potentially associated with anxiety and depression symptoms. RESULTS: Mean HADS Depression score was 4.4 (standard deviation = 3.7) and mean HADS Anxiety score was 7.9 (standard deviation = 5.0). Eleven (20%) women scored ≥8 on the HADS Depression subscale, the suggested threshold for depression/anxiety screening, and 24 (44%) women scored ≥8 on the HADS Anxiety subscale. In a multivariable model of anxiety, higher physical symptom scores (odds ratio = 4.41, p = 0.005) was significantly associated with higher anxiety scores. None of the other variables improved the model fit. CONCLUSION: In this study, a considerable proportion of young women with newly diagnosed MBC experienced anxiety symptoms, although depression was less common. Future strategies focused on distress reduction in young MBC patients should focus on physical symptom management as well as anxiety identification and management.
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Ansiedade/epidemiologia , Neoplasias da Mama/epidemiologia , Carcinoma/epidemiologia , Depressão/epidemiologia , Adulto , Ansiedade/psicologia , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Carcinoma/psicologia , Carcinoma/secundário , Efeitos Psicossociais da Doença , Estudos Transversais , Depressão/psicologia , Escolaridade , Feminino , Humanos , Modelos Logísticos , Modelos Psicológicos , Análise Multivariada , Metástase Neoplásica , Prevalência , Classe Social , Apoio Social , Espiritualidade , Adulto JovemRESUMO
PURPOSE: Parents with advanced cancer are faced with difficult decision-making about communication about their illness with their children. The objectives of this study were to describe how parents communicated with their children about advanced cancer and to explore associations between communication and parental depression and anxiety. METHODS: This was a cross-sectional, mixed-methods study of 42 patients with stage IV solid tumor malignancies who had at least one child less than 18 years of age. Participants completed a semi-structured interview and the Hospital Anxiety and Depression Scale (HADS). We used multiple linear regression to evaluate the association between extent of communication and HADS Anxiety and Depression scores. Interview data were analyzed using standard qualitative content and thematic techniques and triangulated with survey data. RESULTS: Higher HADS Anxiety scores, but not HADS Depression scores, were cross-sectionally associated with greater extent of parental communication (p = 0.003), even when controlling for performance status and children's ages. In qualitative analyses, parents who acknowledged the terminal nature of their illness or experienced higher symptom burden were more likely to report that they also communicated more extensively with children. A third of parents (n = 14, 33%) described difficulty with illness-related communication with their children. CONCLUSIONS: In this pilot study, parents with advanced cancer who reported more illness-related communication with their children also reported more symptoms of general anxiety. Future interventions should address psychological distress relevant to parenting and further assess how parental communication may be linked to parental mood symptoms.
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Ansiedade/psicologia , Depressão/psicologia , Neoplasias/psicologia , Pais/psicologia , Adulto , Comunicação , Estudos Transversais , Transtorno Depressivo , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/patologia , Projetos Piloto , Inquéritos e Questionários , Adulto JovemRESUMO
The authors developed and tested a novel measure of parenting self-efficacy specifically for recently widowed parents of dependent-age children. They tested the scale among 244 recently widowed fathers via an open-access web survey. Exploratory factor analysis identified 3 factors: perception of meeting parenting expectations (α = .88), provision of effective discipline (α = .69), and sense of parental burden (α = .69). Scores on the new scale correlated positively with Kansas Parenting Satisfaction and Psychological Adaptation Scale scores, and negatively with CES-D (depression) and TRIG (grief) scale scores. The resulting 9-item Widowed Parenting Self Efficacy Scale is a promising measure for use in research and clinical settings.
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Adaptação Psicológica , Pai/psicologia , Poder Familiar/psicologia , Psicometria/instrumentação , Autoeficácia , Viuvez/psicologia , Adulto , Humanos , Masculino , Psicometria/normasRESUMO
BACKGROUND: Decision-making about advanced cancer treatment is complex and may be influenced by patients' family context, including the presence of children. We explored how parental values and concerns motivate patients' preferences about aggressiveness of advanced cancer treatment as well as preferences for palliative care and hospice services. METHODS: We conducted semi-structured interviews with 42 patients with advanced cancer who had at least one child under 18 years. We created and applied thematic codes. Descriptive analyses were used to report the number of participants who mentioned each code. RESULTS: The majority of participants (29/42) reported that having children influenced their preferences for advanced cancer care. For most parents, extending life to maximize the time they had left to parent their children was important in guiding treatment preferences. Others prioritized preserving their physical condition and parental functioning and remaining physically close to their children. Many parents discussed life extension and parental functioning preservation as competing priorities. Most of the sample expressed interest in palliative care services and hospice, but responses by several participants reflected concerns about dying at home and lack of clarity about the role of early palliative care. CONCLUSIONS: Parents in our sample expressed that maximizing time with their children and preserving parental functioning were important concerns underlying their preferences for advanced cancer care. Future research should assess the palliative and end-of-life care needs and preferences of parents with advanced cancer, which may differ from those of non-parents. Copyright © 2016 John Wiley & Sons, Ltd.
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Tomada de Decisões , Neoplasias/terapia , Pais/psicologia , Preferência do Paciente , Adolescente , Adulto , Criança , Feminino , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Entrevistas como Assunto , Expectativa de Vida , Masculino , Neoplasias/psicologia , Cuidados Paliativos , Índice de Gravidade de Doença , Assistência TerminalRESUMO
BACKGROUND: In recent decades, psychiatrists have become increasingly involved in the care of patients with cancer. Psychiatrists are often less familiar with the field of radiation oncology than with other medical specialties. OBJECTIVE: Therefore, it is beneficial for consulting psychiatrists to be familiar with the basic principles of radiation therapy (RT) and its potential neuropsychiatric sequelae. METHODS: We performed a PubMed search to identify articles describing neuropsychiatric symptoms resulting from RT, including anxiety, claustrophobia, posttraumatic stress disorder, and neurocognitive impairment. We also searched for other sequelae of RT that may produce psychiatric symptoms, such as radiation necrosis and endocrinopathies. We provide a basic introduction to the delivery of RT. RESULTS: Psychiatrists may be involved in the treatment of patients before, during, or after RT, and each phase of treatment produces unique considerations. Anxiety about the treatment, especially the need for immobilization with a mask, can be treatment-limiting. Adverse effects from treatment, including cognitive impairment and endocrinopathies, can result in psychiatric symptoms. CONCLUSIONS: Consulting psychiatrists should be familiar with the basic principles of RT and the neuropsychiatric sequelae that may result from the treatment. Further research is needed to identify strategies to help patients tolerate RT and to identify additional preventive and therapeutic options for RT-induced cognitive impairment.
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Transtornos Mentais/psicologia , Transtornos Mentais/terapia , Neoplasias/psicologia , Neoplasias/radioterapia , Humanos , Transtornos Mentais/complicações , Neoplasias/complicaçõesRESUMO
BACKGROUND: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. AIM: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. DESIGN: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. SETTING AND PARTICIPANTS: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0-1) and 17 with low functional status (ECOG=2-4). RESULTS: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) "missing out" and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. CONCLUSION: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.
Assuntos
Neoplasias/psicologia , Cuidados Paliativos/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Pais/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Metástase Neoplásica , Pesquisa QualitativaRESUMO
OBJECTIVE: Parents with life-limiting illness anticipate the loss of their parental role and the long-term consequences of their illness on their children. The purpose of this study was to examine relationships between parenting concerns, quality of life (QOL), and symptoms of depression and anxiety in parents with advanced cancer who have dependent children. METHODS: Sixty-three parents diagnosed with a Stage IV solid malignancy completed the Hospital Anxiety Depression Scale (HADS), Parenting Concerns Questionnaire (PCQ), and Functional Assessment of Cancer Therapy-General (FACT-G). The Medical Outcomes Study Social Support Survey (social support) and Eastern Cooperative Oncology Group (ECOG) performance status were assessed as potential covariates. We performed descriptive statistics and multivariable linear regression models for depression, anxiety, and QOL measures. RESULTS: Mean PCQ score was 2.3 (SD 0.9), reflecting mild to moderate parenting concerns. Average depression and anxiety scores were 6.0 (SD 4.2) and 8.2 (SD 3.9), respectively. PCQ scores were associated with depressive symptoms (r = 0.46, p < 0.001), anxiety symptoms (r = 0.52, p < 0.0001), and QOL scores (r = -0.60, p < 0.001). The relationship of PCQ scores to anxiety symptoms (B = 1.5 p = 0.016) and QOL (B = -5.7, p = 0.02) remained significant after controlling for ECOG status, social support, and treatment status. CONCLUSIONS: Parenting concerns are associated with anxiety and depressive symptoms and worse QOL in parents diagnosed with advanced cancer. Further studies that evaluate how parental status affects coping and psychological distress in advanced cancer are needed.Copyright © 2015 John Wiley & Sons, Ltd.