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2.
Sci Rep ; 14(1): 21357, 2024 09 12.
Artigo em Inglês | MEDLINE | ID: mdl-39266693

RESUMO

When individuals face life pressure or significant family changes, individuals with better family adaptation can better survive the crisis. Although the influencing factors of family adaptation have been investigated, the application of potential profile analysis has yet to be found. This analytical approach can reveal different potential categories of family adaptation, providing new perspectives for theoretical development and interventions. This study used latent profile analysis to explore family adaptation levels in breast cancer patients and identify different latent categories, examining their characteristic differences. A cross-sectional study was conducted in Jinzhou, China, from July 2023 to March 2024. The questionnaire included Sociodemographic and clinical characteristics, Benefit Finding Scale (BFS), Dyadic Coping Scale (DCI), Chinese Perceived Stress Scales (PSS), and Family adaptability and cohesion evaluation scales (FACES). Mplus8.3 and SPSS26.0 software were used for data analysis. The latent profile analysis (LPA) method was used to fit the family adaptations of breast cancer patients. Three latent categories of family adaptation were identified: low-level family adaptation (21.5%), medium level family adaptation (47.8%), and high-level family adaptation (30.6%). All 14 items with high levels of family adaptation scored higher than the other two groups. In particular, out of all the categories, item 9, "The idea of educating children is sound," scored highest. Compared with the low-level group, the influential factors of family adaptation in the high-level group were BFS, DCI, PSS, relapse and personal monthly income; The factors influencing family adaptation at the middle level are DCI, BFS, breast cancer type, family history of breast cancer, and personal monthly income. Compared with the medium level group, PSS and DCI were the influential factors of family adaptation in the high-level group. Family adaptation in breast cancer patients can be divided into three categories: low-level, medium-level, and high-level. There were significant differences among different categories of family adaptation levels in "personal monthly income", "family history of breast cancer", "type of breast cancer", "recurrence", "dyadic coping", "benefit finding", and "perception stress".


Assuntos
Adaptação Psicológica , Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/psicologia , Estudos Transversais , Pessoa de Meia-Idade , Adulto , China , Inquéritos e Questionários , Família/psicologia , Estresse Psicológico/psicologia , Idoso
3.
Child Adolesc Psychiatr Clin N Am ; 33(4): 709-728, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39277321

RESUMO

Medications for opioid use disorder (MOUD) are the most effective treatment for OUD. Many patients struggle with adherence, but young adults face unique developmental barriers and experience higher relapse rates. The Youth Opioid Recovery Support (YORS) intervention is a developmentally informed behavioral approach to increase medication adherence through assertive outreach, family involvement, low-barrier access to extended-release MOUD, and contingency management. Early studies have shown promising results, and a randomized controlled trial is underway. Here we describe the implementation of YORS using case examples, offer guidance on adapting YORS to real-world clinical settings, and explore future directions for research and practice.


Assuntos
Transtornos Relacionados ao Uso de Opioides , Humanos , Transtornos Relacionados ao Uso de Opioides/terapia , Adolescente , Serviços Comunitários de Saúde Mental/métodos , Adesão à Medicação , Tratamento de Substituição de Opiáceos/métodos , Adulto Jovem , Família
5.
Proc Natl Acad Sci U S A ; 121(38): e2401379121, 2024 Sep 17.
Artigo em Inglês | MEDLINE | ID: mdl-39269774

RESUMO

Family-based genome-wide association studies (GWASs) are often claimed to provide an unbiased estimate of the average causal effects (or average treatment effects; ATEs) of alleles, on the basis of an analogy between the random transmission of alleles from parents to children and a randomized controlled trial. We show that this claim does not hold in general. Because Mendelian segregation only randomizes alleles among children of heterozygotes, the effects of alleles in the children of homozygotes are not observable. This feature will matter if an allele has different average effects in the children of homozygotes and heterozygotes, as can arise in the presence of gene-by-environment interactions, gene-by-gene interactions, or differences in linkage disequilibrium patterns. At a single locus, family-based GWAS can be thought of as providing an unbiased estimate of the average effect in the children of heterozygotes (i.e., a local average treatment effect; LATE). This interpretation does not extend to polygenic scores (PGSs), however, because different sets of SNPs are heterozygous in each family. Therefore, other than under specific conditions, the within-family regression slope of a PGS cannot be assumed to provide an unbiased estimate of the LATE for any subset or weighted average of families. In practice, the potential biases of a family-based GWAS are likely smaller than those that can arise from confounding in a standard, population-based GWAS, and so family studies remain important for the dissection of genetic contributions to phenotypic variation. Nonetheless, their causal interpretation is less straightforward than has been widely appreciated.


Assuntos
Estudo de Associação Genômica Ampla , Desequilíbrio de Ligação , Polimorfismo de Nucleotídeo Único , Humanos , Estudo de Associação Genômica Ampla/métodos , Herança Multifatorial/genética , Modelos Genéticos , Heterozigoto , Alelos , Homozigoto , Família , Interação Gene-Ambiente
6.
Rev Med Chil ; 152(1): 36-48, 2024 Jan.
Artigo em Espanhol | MEDLINE | ID: mdl-39270095

RESUMO

INTRODUCTION: The COVID-19 pandemic marked a milestone in the history of medicine worldwide. Together with the humanitarian drama it represented, the problems that arose are promoting lines of research in multiple fields. One of these fields is the aspects related to medical communication and end-of-life care. This paper reports the experiences and perceptions of relatives of patients who died during the pandemic with a psychospiritual support intervention in a public hospital in the Metropolitan Region, Chile, called "farewell". METHODS: A qualitative study was conducted with a phenomenological approach based on in-depth interviews. From this, categories were derived that allowed a systematization of the observation of the experiences. RESULTS: Among the results, the impact of the circumstances and the communication provided by the medical team on grief should be highlighted. The use of the word "farewell" emerges as a useful, albeit ambiguous, communicative tool when it comes to adequately framing an end-of-life process. CONCLUSIONS: It is argued that the end of life is an area that requires physical and psychospiritual spaces, and adequate training at all levels to do justice to a highly relevant moment in the care of people.


Assuntos
COVID-19 , Família , Pesquisa Qualitativa , Assistência Terminal , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Chile/epidemiologia , Família/psicologia , Assistência Terminal/psicologia , Masculino , Feminino , SARS-CoV-2 , Atitude Frente a Morte , Adulto , Pandemias , Pessoa de Meia-Idade , Pesar , Entrevistas como Assunto , Idoso , Comunicação
7.
Int J Palliat Nurs ; 30(8): 444-450, 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39276140

RESUMO

BACKGROUND: In Indonesia, the diagnosis of a serious illness is often mediated through the patient's family, reflecting the cultural importance of family involvement in the patient's care and collective decision-making. AIM: To use a case study to show the difficulty that healthcare professionals face telling the patient the truth about their condition in Indonesia. METHOD: The Kagawa-Singer and Blackhall ABCDE framework was used during truth-telling dilemmas to assess patients' and families' attitudes (A), beliefs (B), contexts (C), decision-making styles (D) and environments (E). FINDINGS: Studies have shown that family involvement in health-related communications can alleviate the stress associated with the disclosure of a serious illness. Palliative care nurses must acknowledge the importance of family in the patient's cultural context, by involving them in the disclosure of a diagnosis and disease trajectory by integrating every element of the ABCDE model in palliative care.


Assuntos
Cuidados Paliativos , Revelação da Verdade , Humanos , Indonésia , Relações Profissional-Família , Feminino , Tomada de Decisões , Masculino , Família/psicologia , Adulto , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Atitude do Pessoal de Saúde
8.
Epilepsy Behav ; 159: 110021, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39217757

RESUMO

OBJECTIVE: The social prognosis for individuals with epilepsy is often poorer than their clinical prognosis, highlighting the significant influence of social factors on the progression of the disease. Relatives of patients with epilepsy (RPEs) generally have more positive attitudes towards epilepsy compared to the general population. This study aimed to examine the effect of being an RPE on the relationship between attitudes toward epilepsy and levels of disease knowledge. METHODS: This cross-sectional analytical study included 217 adult participants, comprising 93 RPEs and 124 controls (non-RPEs), selected through convenience sampling. Data were collected via face-to-face interviews using a questionnaire that included sections on socio-demographic characteristics, the Epilepsy Knowledge Scale, and the Public Attitudes Toward Epilepsy (PATE) Scale. Path analysis was conducted using the Maximum Likelihood method. Due to the non-normal distribution of exogenous variables, the robust Huber/White/sandwich estimator method was used to calculate confidence intervals and fit indices. RESULTS: The mean age of the participants was 34.7 ± 11.5 years, with 128 (59.0 %) being female. RPEs scored an average of 26.8 ± 9.9 on the PATE Scale, which was significantly lower than the average score of 29.7 ± 11.0 for non-RPEs (p = 0.047). Path analysis indicated that being an RPE indirectly fosters a positive attitude through increased knowledge levels. While the direct effect of being an RPE on attitudes was not statistically significant, the indirect effect mediated by knowledge was significant. SIGNIFICANCE: This study highlights that the level of knowledge about epilepsy, a key predictor of positive attitudes, remains important even among RPEs. In kinship contexts where neurobiological and psychosocial factors are at play, the primary determinant of attitudes toward epilepsy is still the level of knowledge about the condition. Consequently, focusing on increasing knowledge about epilepsy should be the main strategy to promote positive attitudes, providing a more promising avenue for future research and interventions.


Assuntos
Epilepsia , Família , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Feminino , Epilepsia/psicologia , Masculino , Adulto , Estudos Transversais , Pessoa de Meia-Idade , Adulto Jovem , Inquéritos e Questionários , Família/psicologia
9.
Science ; 385(6714): 1154-1157, 2024 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-39265015

RESUMO

A variant called APOE4 is notorious for its link to Alzheimer's. Can new insights into its function help stave off disease?


Assuntos
Doença de Alzheimer , Apolipoproteína E4 , Humanos , Doença de Alzheimer/genética , Apolipoproteína E4/genética , Masculino , Feminino , Idoso , Família
10.
J Prof Nurs ; 54: 228-233, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39266095

RESUMO

BACKGROUND: National initiatives such as 'Joining Forces' and the 'Have you ever served in the military?' campaign increased awareness of the needs of the military and veteran population. Yet, empirical evidence suggests that nurses and other healthcare providers continue to report insufficient cultural competency, as well as knowledge and awareness of unique healthcare needs to provide optimal care to this population. PURPOSES: The study purposes were to explore nurses' and nursing students' knowledge, attitudes, confidence, and comfort levels to care for veterans and their family, identify potential factors associated with these outcome measures, and examine the relationships between knowledge, attitudes, confidence, and comfort. METHOD: A quantitative, cross-sectional study design guided an online survey of 153 respondents. The military and veteran family cultural competency model provided a theoretical foundation. FINDINGS: Overall, the confidence in skills and abilities, and comfort levels on addressing military culture, providing care, and discussing health issues increases as participants' gain knowledge and awareness of the military. Having an immediate family member(s) who served in the military was a significant factor related to confidence. IMPLICATIONS: Nursing students and nurses in practice need education aimed at addressing the veteran care competencies, specifically military/veteran culture.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Estudantes de Enfermagem , Veteranos , Humanos , Estudantes de Enfermagem/psicologia , Estudos Transversais , Veteranos/psicologia , Masculino , Feminino , Adulto , Inquéritos e Questionários , Família/psicologia , Competência Cultural , Pessoa de Meia-Idade , Atitude do Pessoal de Saúde , Competência Clínica
11.
Sci Rep ; 14(1): 21171, 2024 09 11.
Artigo em Inglês | MEDLINE | ID: mdl-39256441

RESUMO

Understanding what matters to people with Parkinson's and their family is essential to derive relevant clinical outcome measures and guide clinical care. The purpose of this study was to explore what is important to people with Parkinson's disease vs. family over time. A qualitative content-analysis of online survey data collected by Parkinson's UK was conducted to identify types and frequencies of important symptoms and impacts of Parkinson's for people with the disease vs. family of people with Parkinson's. Independent T-tests were used to identify significance of between group differences for patients vs. family at < 2, 2-5, 6-10, 11-20, > 20-year durations. ANOVA was used to assess for within group differences by disease duration. We found that symptom priority changed significantly over time with longer disease duration. Tremor was reported less often later on, whereas mobility, dyskinesias, gait and speech/communication symptoms gained priority. In general, patients identified movement-related symptoms (e.g., walking, bradykinesia) as the most bothersome at all durations while family more strongly prioritized the physical and psychosocial impacts of disease (e.g., mobility, safety, interpersonal interactions, independence, and family impact). We conclude that important differences exist between family and patient perspectives of what matters and change over time with longer duration of disease.


Assuntos
Família , Doença de Parkinson , Humanos , Doença de Parkinson/psicologia , Doença de Parkinson/fisiopatologia , Masculino , Feminino , Família/psicologia , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Qualidade de Vida
12.
BMC Neurol ; 24(1): 333, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39256658

RESUMO

BACKGROUND: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury. METHODS: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects. RESULTS: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated. CONCLUSIONS: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs. TRIAL REGISTRATION: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018.


Assuntos
Lesões Encefálicas Traumáticas , Sobrecarga do Cuidador , Cuidadores , Humanos , Masculino , Feminino , Lesões Encefálicas Traumáticas/psicologia , Lesões Encefálicas Traumáticas/reabilitação , Lesões Encefálicas Traumáticas/terapia , Pessoa de Meia-Idade , Sobrecarga do Cuidador/psicologia , Adulto , Cuidadores/psicologia , Família/psicologia , Efeitos Psicossociais da Doença , Idoso , Objetivos , Depressão/psicologia , Depressão/etiologia , Depressão/epidemiologia , Resultado do Tratamento , Carga de Sintomas
13.
BMC Public Health ; 24(1): 2298, 2024 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-39256716

RESUMO

BACKGROUND: Understanding the impact of environmental factors on physical activity (PA) and physical fitness (PF) is crucial for promoting a healthy lifestyle among children and adolescents. This study examines how awareness of sports policies, school, family, and community environments influence PA and PF in Chinese youth. METHODS: A cross-sectional study was conducted with 2747 children and adolescents (mean age 12.90 ± 2.49; 48.2% male) from 17 schools across five Chinese cities. Environmental factors were assessed via questionnaires, and PA levels were measured using the International Physical Activity Questionnaire-Short Form (IPAQ-SF). PF metrics, including BMI, waist-to-height ratio, grip strength, vertical jump, and 20-m shuttle run test (20-mSRT), were measured onsite. Structural Equation Modeling (SEM) was used to explore relationships between environmental factors and PA/PF outcomes. RESULTS: The school environment scored highest (78.0 ± 9.5), while the community environment scored lowest (38.7 ± 18.0). Family environment positively influenced low-intensity PA (LPA) (ß = 0.102, P < 0.001) but negatively affected moderate-to-vigorous PA (MVPA) (ß = -0.055, P = 0.035). Community environment and awareness of sports policies positively impacted MVPA (ß = 0.216, P < 0.001; ß = 0.072, P = 0.009, respectively). Family environment positively influenced BMI reduction (ß = -0.103, P < 0.001) but negatively affected grip strength (ß = -0.063, P = 0.018). Community environment improved grip strength and 20-mSRT performance (ß = 0.088, P = 0.002; ß = 0.065, P = 0.027). CONCLUSIONS: School environments, despite high scores, do not significantly impact PA and PF. Community environments, though scoring lower, positively affect MVPA, grip strength, and 20-mSRT. Awareness of sports policies boosts MVPA, while family environments support LPA and BMI but are inversely related to MVPA and grip strength. Integrated strategies involving community infrastructure, family support, and policy awareness are essential for promoting active lifestyles among children and adolescents.


Assuntos
Exercício Físico , Aptidão Física , Instituições Acadêmicas , Esportes , Humanos , Masculino , Adolescente , Feminino , Estudos Transversais , Aptidão Física/fisiologia , Criança , China , Análise de Classes Latentes , Família , Inquéritos e Questionários , Características de Residência/estatística & dados numéricos , Política de Saúde
14.
BMC Health Serv Res ; 24(1): 1044, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39256742

RESUMO

BACKGROUND: Over the last decade attention has grown to give patients and next of kin (P/N) more substantial roles in adverse event investigations. Adverse event investigations occur after adverse events that resulted in death or severe injury. Few studies have focused on patient perspectives on their involvement in such investigations. The present study sets out to investigate how P/N and patient representatives (client councils and the Patient Federation Netherlands) view the involvement of P/N in adverse event investigations, particularly whether and why they want to involved, and how they want to shape their involvement. METHODS: The study features qualitative data on three levels: interviews with P/N (personal), focus groups with representatives of client councils (institutional), and an interview with the Patient Federation Netherlands (national). Researchers used inductive, thematic analysis and validated the results through data source triangulation. RESULTS: The initiative taken by the hospitals in this study provided P/N with the space to feel heard and a position as legitimate stakeholder. P/N appreciated the opportunity to choose whether and how they wanted to be involved in the investigation as stakeholders. P/N emphasized the need for hospitals to learn from the investigations, but for them the investigation was also part of a more encompassing relationship. P/N's views showed the inextricable link between the first conversation with the health care professional and the investigation, and the ongoing care after the investigation was finalized. Hence, an adverse event investigation is part of a broader experience when understood from a patient perspective. CONCLUSIONS: An adverse event investigation should be considered as part of an existing relationship between P/N and hospital that starts before the investigation and continues during follow up care. It is crucial for hospitals to take the initiative in the investigation and in the involvement of P/N. P/N motivations for involvement can be understood as driven by agency or communion. Agentic motivations include being an active participant by choice, while communion motivations include the need to be heard.


Assuntos
Grupos Focais , Erros Médicos , Pesquisa Qualitativa , Humanos , Países Baixos , Erros Médicos/psicologia , Entrevistas como Assunto , Feminino , Masculino , Participação do Paciente , Família/psicologia , Pessoa de Meia-Idade , Segurança do Paciente
15.
Hum Genomics ; 18(1): 98, 2024 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-39256828

RESUMO

This study aims to assess the effect of familial structures on the still-missing heritability estimate and prediction accuracy of Type 2 Diabetes (T2D) using pedigree estimated risk values (ERV) and genomic ERV. We used 11,818 individuals (T2D cases: 2,210) with genotype (649,932 SNPs) and pedigree information from the ongoing periodic cohort study of the Iranian population project. We considered three different familial structure scenarios, including (i) all families, (ii) all families with ≥ 1 generation, and (iii) families with ≥ 1 generation in which both case and control individuals are presented. Comprehensive simulation strategies were implemented to quantify the difference between estimates of [Formula: see text] and [Formula: see text]. A proportion of still-missing heritability in T2D could be explained by overestimation of pedigree-based heritability due to the presence of families with individuals having only one of the two disease statuses. Our research findings underscore the significance of including families with only case/control individuals in cohort studies. The presence of such family structures (as observed in scenarios i and ii) contributes to a more accurate estimation of disease heritability, addressing the underestimation that was previously overlooked in prior research. However, when predicting disease risk, the absence of these families (as seen in scenario iii) can yield the highest prediction accuracy and the strongest correlation with Polygenic Risk Scores. Our findings represent the first evidence of the important contribution of familial structure for heritability estimations and genomic prediction studies in T2D.


Assuntos
Diabetes Mellitus Tipo 2 , Predisposição Genética para Doença , Linhagem , Polimorfismo de Nucleotídeo Único , Humanos , Diabetes Mellitus Tipo 2/genética , Feminino , Polimorfismo de Nucleotídeo Único/genética , Masculino , Genômica/métodos , Irã (Geográfico) , Modelos Genéticos , Estudos de Coortes , Estudo de Associação Genômica Ampla , Genótipo , Estudos de Casos e Controles , Pessoa de Meia-Idade , Família , Estrutura Familiar
16.
Front Public Health ; 12: 1392153, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39257952

RESUMO

Background: As China has undergone the processes of urbanization and economic development, a large migrant population has emerged, creating new family migration trends. Family migration brings about changes in urban integration costs and benefits, affecting health investment. Objective: The primary objective of this research is to investigate the influence of urban integration of migrant workers' families on their mental wellbeing, with the aim of offering policy recommendations conducive to the realization of a comprehensive public health strategy in China. Methods: This paper uses multi-dimensional indexes to measure family urban integration, covering economic, social and psychological dimensions, which may consider the complexity of integration. Utilizing a machine learning clustering algorithm, the research endeavors to assess the level of urban integration experienced by migrant workers and their respective families. The analysis discerns three distinct clusters denoting varying degrees of urban integration within these familial units, namely high-level, medium-level, and low-level urban integration. We applied binary logit regression models to analyze the influence of family urban integration on the mental health among migrant workers. Then we conducted a series of robustness tests. Results: The results show that family urban integration decreases the probability of depressive symptoms by 14.6 percentage points. Further mechanism tests show that family economic integration enhances the psychological wellbeing of migrant workers by elevating their income status. Family social integration decreases depressive symptoms by increasing social status. Family psychological integration increases the psychological health of migrant workers by making them more satisfied with their lives. The heterogeneity test shows that family urban integration and its different dimensions have a strong impact on the depressive symptoms of women, first-generation, and less-educated groups. Conclusions: This study finds that family urban integration and its economic, social, and psychological dimensions significantly reduced the depressive symptoms of migrant workers. The results of this study lead the authors to recommend formulating a family-centered policy for migrant workers to reside in urban areas, optimizing the allocation of medical resources and public services, and improving family urban integration among migrant workers in order to avoid mental health problems in the process of urban integration.


Assuntos
Saúde Mental , Migrantes , Humanos , China , Migrantes/psicologia , Migrantes/estatística & dados numéricos , Feminino , Masculino , Adulto , Família/psicologia , População Urbana/estatística & dados numéricos , Urbanização , Depressão/psicologia , Depressão/epidemiologia , Integração Social , Pessoa de Meia-Idade
17.
J Pediatr Hematol Oncol Nurs ; 41(4): 240-251, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39263727

RESUMO

Background: The end of treatment (EOT) is a significant time point along the childhood cancer treatment-survivorship continuum, and is recognized as a time when childhood cancer survivors (CCS) and their families experience significant vulnerability and stress. There is a call by families and healthcare professionals alike for standardized, comprehensive EOT services to successfully navigate through this transition period and better cope with posttreatment medical, physical, and social-emotional issues. Method: A multidisciplinary team of pediatric oncology health care professionals developed and implemented a two-session psychoeducational program to address these EOT needs. To evaluate the Shooting for the STARS (Survivors Tackling All Roadblocks Successfully) EOT Transition Program, a pretest-posttest repeated measures design was utilized. A convenience sample of 47 parents/caregivers and 29 CCS completed surveys before, during, and after the EOT services were received. Analysis of relationships and changes over time was conducted using Spearman-ranked correlations and Friedman tests, a nonparametric repeated measures analysis of variance. Results: All respondents reported program satisfaction, with 94.7% feeling somewhat or very prepared for ending treatment. Participants' distress levels tended to decrease over time. Parent/caregiver-reported levels of CCS' anxiety, fatigue, pain interference, and physical mobility significantly improved over the time period during which families participated in the Shooting for the STARS Program. Discussion: This nurse-led, evidence-based program was determined to be feasible and acceptable. It may contribute to improved health-related quality of life and decrease distress over time.


Assuntos
Sobreviventes de Câncer , Humanos , Sobreviventes de Câncer/psicologia , Feminino , Masculino , Criança , Adulto , Adolescente , Neoplasias/terapia , Neoplasias/psicologia , Cuidadores/psicologia , Família/psicologia , Qualidade de Vida/psicologia
18.
J Fam Nurs ; 30(3): 255-266, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39268852

RESUMO

This study aimed to assess the feasibility of a complex family nursing intervention (SAFIR©) designed to support families of patients with acquired brain injuries during the early phase of hospitalization, using a one-group pre- and post-test design with a one-month follow-up. Family members participated in four family meetings. Quantitative data were collected using an intervention protocol checklist and questionnaires. Qualitative data were gathered through semi-structured interviews, written open-ended questions, and note-taking. Feasibility outcomes revealed a family recruitment rate of 15.4% and a retention rate of 100%. Protocol adherence ranged from 94% in Phase 1 to 78% in Phase 3. Our results indicated that the intervention was meaningful and suitable for family members (n=7), healthcare provider (n=1), and nursing managers (n=6). From a sustainability perspective, our findings suggest the need to formally involve the entire inter-professional team in the intervention. Further evaluation of the intervention is warranted through a large-scale experimental.


Assuntos
Lesões Encefálicas , Família , Estudos de Viabilidade , Hospitalização , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Lesões Encefálicas/enfermagem , Adulto , Família/psicologia , Idoso , Inquéritos e Questionários , Enfermagem Familiar/métodos , Enfermagem Familiar/normas , Pesquisa Qualitativa
19.
Int J Older People Nurs ; 19(5): e12647, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39277879

RESUMO

BACKGROUND: Due to rapid increases in the number of Korean people with dementia, dementia has become a priority health issue in South Korea. Likewise, the well-being of family caregivers of people with dementia has also become an issue of concern. However, little is known about the resilience of Korean family caregivers because there is a lack of review studies from a Korean cultural perspective about the resilience of family caregivers of people with dementia. OBJECTIVES: The purpose of this scoping review was to investigate quantitative studies related to resilience theories, measurement instruments, correlates and resilience interventions for family caregivers of people with dementia. METHOD: This review was conducted according to the Joanna Briggs Institute based on Arksey and O'Malley. Nine databases were searched to retrieve evidence published in English or Korean between January 2000 and September 2022. Studies with a quantitative research design reporting the resilience of family caregivers of people with dementia based on a resilience theory framework were included. RESULTS: A total of 13 studies were included in this review. All studies used either a modified McCubbin and McCubbin's family stress, adjustment and adaptation model or Walsh's family resilience model. All resilience instruments were used without cross-cultural adaptation. Family adaptation, social support, life satisfaction, family (di)stress and caregiver burden were associated with resilience among family caregivers. A few family resilience-enhancing programmes showed a positive effect on caregiver resilience. CONCLUSION: This review noted that all the resilience measures documented in this study need to test for cultural adaptation in a Korean context. Further research is required to develop and implement family-based, culturally tailored interventions to effectively enhance Korean resilience for family caregivers of people with dementia. IMPLICATIONS FOR PRACTICE: Gerontological nurses should include Korean family caregivers in their nursing care and assess whether family caregivers have depression or suicidal thoughts to promote better health outcomes for caregivers and their family members.


Assuntos
Cuidadores , Demência , Resiliência Psicológica , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/etnologia , República da Coreia/etnologia , Adaptação Psicológica , Apoio Social , Família/psicologia
20.
BMC Palliat Care ; 23(1): 226, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39266990

RESUMO

BACKGROUND: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. AIMS: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. DESIGN: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. SETTING/PARTICIPANTS: Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. RESULTS: A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. CONCLUSIONS: Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process.


Assuntos
Luto , COVID-19 , Família , Pandemias , Pesquisa Qualitativa , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Feminino , Masculino , Pessoa de Meia-Idade , Família/psicologia , Adulto , Idoso , SARS-CoV-2 , Entrevistas como Assunto/métodos , Comunicação , Apoio Social
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