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1.
Cell ; 186(8): 1518-1522, 2023 04 13.
Artigo em Inglês | MEDLINE | ID: mdl-37059059

RESUMO

My patient was in his late 20s and dying of an advanced sarcoma. He came to our institution seeking a miracle-a cure for his incurable cancer. Despite second and third opinions, he never relinquished his hope that science would cure him. In this story, I explore how hope allowed my patient, and others like him, to reclaim their narratives and maintain their personhood in the face of serious illness.


Assuntos
Esperança , Neoplasias , Humanos , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Pesquisa Biomédica , Encaminhamento e Consulta
9.
Psychosom Med ; 86(7): 578-579, 2024 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-38916222

RESUMO

ABSTRACT: Many patients suffer from chronic pain despite the absence of injury or sufficient biomedical disease to explain their pain. These pains are highly resistant to treatment. Psychological therapies designed to help patients undermine the negative thought and behavioral patterns that maintain pain provide only modest pain relief, leading to suspicion that such pain might be maintained by unconscious processes. An article in this issue of Psychosomatic Medicine provides the first experimental evidence that unconscious negative memories can increase pain unpleasantness. These findings are exciting, but the effect sizes are small, which is consistent with the small effects of psychological therapy. It seems that pain stubbornly resists psychological manipulation, but this work provides some hope that psychological therapy for pain can be improved to provide more effective pain relief.


Assuntos
Dor Crônica , Esperança , Humanos , Dor Crônica/terapia , Dor Crônica/psicologia , Manejo da Dor/métodos , Inconsciente Psicológico , Psicoterapia/métodos
10.
Psychooncology ; 33(3): e6316, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38446540

RESUMO

OBJECTIVE: Observational data suggest hope is associated with the quality of life and survival of people with cancer. This trial examined the feasibility, acceptability, and preliminary outcomes of "Pathways," a hope intervention for people in treatment for advanced lung cancer. METHODS: Between 2020 and 2022, we conducted a single-arm trial of Pathways among participants who were 3-12 weeks into systemic treatment. Pathways consisted of two individual sessions delivered during infusions and three phone calls in which participants discussed their values, goals, and goal strategies with a nurse or occupational therapist. Participants completed standardized measures of hope and goal interference pre- and post-intervention. Feasibility was defined as ≥60% of eligible patients enrolling, ≥70% of participants completing three or more sessions, ≥70% of participants completing post-assessments, and mean acceptability ratings ≥7 out of 10 on intervention relevance, helpfulness, and convenience. Linear regression fixed effects models with covariates modeled pre-post changes in complete case analysis and multiple imputation models. RESULTS: Fifty two participants enrolled: female (59.6%), non-Hispanic White (84.6%), rural (75.0%), and with low educational attainment (51.9% high school degree or less). Except for enrollment (54%), feasibility and acceptability markers were surpassed (77% adherence, 77% retention, acceptability ratings ≥8/10). There was moderate improvement in hope and goal interference from pre-to post-intervention (d = 0.51, p < 0.05 for hope; d = -0.70, p < 0.005 for goal interference). CONCLUSIONS: Strong feasibility, acceptability, and patient-reported outcome data suggest Pathways is a promising intervention to increase hope and reduce cancer-related goal interference during advanced lung cancer treatment.


Assuntos
Esperança , Neoplasias Pulmonares , Feminino , Humanos , Masculino , Escolaridade , Modelos Lineares , Neoplasias Pulmonares/terapia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida
12.
Epilepsy Behav ; 156: 109790, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38692022

RESUMO

BACKGROUND: Dravet syndrome (DS) is a Developmental and Epileptic Encephalopathy (DEE) with onset typically in infancy. Seizures are pharmaco-resistant, and neurodevelopment is compromised in almost all children. There is limited data on the impact of the condition on the family, support needs and hopes and fears in Sweden. METHODS: Interviews were undertaken with the caregivers of 36 of 48 (75%) living children with DS in Sweden focusing on the perceived impact on the family, current supports and hopes and fears for the future. Data from the interviews were analyzed by two raters using reflexive thematic analysis. RESULTS: The analysis revealed seven main themes focusing on the perceived negative impact the disease has on caregivers and family functioning. These negative impacts concerned: caregiver sleep (e.g., frequent night waking), siblings (e.g., gets less attention/time), social life (e.g., limited vacations), family finances (e.g., limited career progression), parental health (both mental and physical) and need for constant supervision (e.g., child's need for constant supervision for fear of seizures). Another theme concerned the impact on family relationships. Whilst some caregivers perceived the impact to be negative (e.g., limited time for each other) others felt that having a child with DS lead to stronger relationships and more 'teamwork'. With respect to supports, the caregivers identified a number of areas where they felt the family could access appropriate supports. Themes regarding supports included: support from the wider family and friends, support from DS support groups (online or in-person), support from the child's hospital or disability service and respite care (e.g., child was looked after on weekends or had paid carers in the home). Regarding hopes and fears for the future, responses focused mainly on fears, including concerns about premature death of the child, transition to adult healthcare services and care arrangements for child when parents are dead. Hopes for the future included better treatment for epilepsy and associated neurodevelopmental problems and finding a cure for DS. CONCLUSIONS: Caregivers of children with DS report that the disease can have a very comprehensive negative impact on caregiver and family functioning. Identifying and providing the supports to ameliorate these negative impacts is vital to optimize caregiver and family wellbeing and quality of life.


Assuntos
Cuidadores , Epilepsias Mioclônicas , Medo , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Epilepsias Mioclônicas/psicologia , Masculino , Feminino , Medo/psicologia , Criança , Adulto , Pré-Escolar , Suécia/epidemiologia , Família/psicologia , Esperança , Adolescente , Apoio Social , Pessoa de Meia-Idade , Adulto Jovem , Percepção , Lactente
17.
Support Care Cancer ; 32(6): 348, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38743085

RESUMO

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5 years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. RESULTS: Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. CONCLUSIONS: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.


Assuntos
Sobreviventes de Câncer , Hispânico ou Latino , Espiritualidade , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem , Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Hispânico ou Latino/psicologia , Esperança , Neoplasias/psicologia , Neoplasias/terapia , Projetos Piloto , Pesquisa Qualitativa
18.
Support Care Cancer ; 32(8): 522, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39017733

RESUMO

PURPOSE: Patients with brain cancer and painful symptoms of the disease experience heavy pressure and negative inner experiences, leading to a sense of stigma. Therefore, this study assessed the level of stigma in patients with brain cancer and analyzed the risk factors for stigma to analyze the underlying relationships among depression, social support, low self-esteem, and stigma. METHODS: Patients completed the Social Impact Scale, Self-rating Depression Scale, Rosenberg Self-Esteem Scale, Herth Hope Index, Social Support Rating Scale, and Self-Perceived Burden Scale. Multiple linear regression analysis was used to identify factors independently associated with stigma. Parallel mediation analysis was used to evaluate the mediating role of the relationship between psychoemotional factors and stigma. RESULTS: A multivariate linear regression analysis demonstrated significant associations between age (ß = - 0.189, P = 0.002), treatment (ß = 0.184, P = 0.003), self-esteem (ß = - 0.128, P = 0.046), depression (ß = 0.273, P < 0.001), hope (ß = - 0.217, P = 0.003), and self-perceived burden (ß = 0.260, P < 0.001) with brain cancer. It was observed that the social support received by brain cancer patients directly impacted their stigma (total effect, - 0.851, P = 0.001). Additionally, this relationship was influenced by depression and self-esteem through two distinct pathways. CONCLUSION: Increased stigma among brain cancer patients was found to be associated with severe depression, feelings of inferiority, diminished hope, and a heavy perceived burden. The structural equation modeling (SEM) revealed that social support negatively influenced stigma through depression and self-esteem. It is imperative to grasp patients' inner needs, implement psychological interventions, and cultivate a cancer-friendly social environment to prevent stigmatization and discrimination based on their patient status.


Assuntos
Neoplasias Encefálicas , Depressão , Análise de Mediação , Autoimagem , Estigma Social , Apoio Social , Humanos , Estudos Transversais , Masculino , Feminino , Pessoa de Meia-Idade , Neoplasias Encefálicas/psicologia , Depressão/psicologia , Depressão/etiologia , Adulto , Idoso , Fatores de Risco , Escalas de Graduação Psiquiátrica , Inquéritos e Questionários , Esperança
19.
Arch Sex Behav ; 53(8): 3139-3150, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39009741

RESUMO

Older lesbian, gay, bisexual, trans, and queer (LGBTQ) individuals tend to live alone, mostly without children and with scarce support from nuclear family members or biological kin. Moreover, traditional resources may not suit their specific end-of-life care needs. While studies have examined these topics in general, they lack focus on end-of-life needs, care, and planning in Israel. Moreover, research on this topic among members of LGBTQ communities is specifically lacking. This study, therefore, aimed at identifying and understanding the attitudes, perceptions, and meanings of older LGBTQ individuals in Israel regarding their needs and challenges, as they age and near end of life. The phenomenological qualitative research methodology was applied, following the interpretive approach. Twenty-one middle-aged and older LGBTQ individuals in Israel, aged ≥ 55, participated in the study. In-depth semi-structured interviews, conducted from November 2020 to April 2021, were audio-recorded, transcribed, and de-identified. Five themes emerged from the interviews: (1) Experiences of loneliness, marginalization, and trauma, and coping through liberation; (2) ageism and exclusion of older adults; (3) elastic and challenging relationships; (4) end of life as reverting into the closet and heteronormativity; and (5) death as a source of generativity and creativity. The study demonstrates that loneliness is an existential experience, exacerbated by the intersectionality of LGBTQ communities. In turn, chosen family members play a minimal role in the end-of-life care of their loved ones. While conveying ambivalence toward social services and housing for the aging, participants in this study expressed fear of being discriminated against and having to re-enter the closet as they age. Ageism and end of life do not represent finality and extinction, yet instead, signify hope and revival. Following Sandberg and Marshall's (2017) concept of queering aging futures, this study refines our understanding of life courses, demonstrating that living and thriving in old age could be positive and desirable. As such, ageism and end of life do not necessarily represent finality and extinction, and may instead signify hope and revival. The unique challenges associated with family and social support of older adults who are LGBTQ members, and their implications on care, deserve further research and are important for practice.


Assuntos
Pesquisa Qualitativa , Minorias Sexuais e de Gênero , Humanos , Minorias Sexuais e de Gênero/psicologia , Israel , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Envelhecimento/psicologia , Solidão/psicologia , Esperança , Adaptação Psicológica , Etarismo/psicologia , Idoso de 80 Anos ou mais
20.
BMC Psychiatry ; 24(1): 340, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38715019

RESUMO

PURPOSE: To explore the mediating effect of hope in the relationships between social support and self-esteem with psychological resilience among patients with stroke survivors in early rehabilitation. METHODS: A cross-sectional study design was adopted. Data from a cross-sectional survey of 210 patients undergoing early stroke rehabilitation were analyzed using structural equation modeling. The variables of interest were measured using the Connor Davidson Resilience Scale, the Social Support Rating Scale, the Herth Hope Index, and the Self-Esteem Scale. This article reports according to the STROBE checklist. RESULTS: A positive relationship was found between social support and psychological resilience (ß1 = 0.548), which was mediated by hope (ß2 = 0.114), and social support had significant direct effect on resilience (ß3 = 0.434). A positive relationship was also found between self-esteem and psychological resilience (ß4 = 0.380), which was mediated by hope (ß5 = 0.200), and self-esteem had significant direct effect on resilience (ß6 = 0.179). CONCLUSION: According to the results of this study, some strategies can be incorporated into the rehabilitation process to enhance psychological resilience, such as cultivating individual personality characteristics and improving patients' social relationships. In the future, we need to explore methods for improving psychological resilience among patients with stroke in combination with their risk factors to improve their quality of life and reduce the incidence of post-stroke depression.


Assuntos
Esperança , Resiliência Psicológica , Autoimagem , Apoio Social , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Idoso , Acidente Vascular Cerebral/psicologia , Reabilitação do Acidente Vascular Cerebral/psicologia , Adulto
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