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1.
Nat Immunol ; 17(5): 495-504, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-27019227

RESUMO

Aberrant nucleic acids generated during viral replication are the main trigger for antiviral immunity, and mutations that disrupt nucleic acid metabolism can lead to autoinflammatory disorders. Here we investigated the etiology of X-linked reticulate pigmentary disorder (XLPDR), a primary immunodeficiency with autoinflammatory features. We discovered that XLPDR is caused by an intronic mutation that disrupts the expression of POLA1, which encodes the catalytic subunit of DNA polymerase-α. Unexpectedly, POLA1 deficiency resulted in increased production of type I interferons. This enzyme is necessary for the synthesis of RNA:DNA primers during DNA replication and, strikingly, we found that POLA1 is also required for the synthesis of cytosolic RNA:DNA, which directly modulates interferon activation. Together this work identifies POLA1 as a critical regulator of the type I interferon response.


Assuntos
DNA Polimerase I/metabolismo , DNA/biossíntese , Interferon Tipo I/metabolismo , RNA/biossíntese , Sequência de Bases , Células Cultivadas , Citosol/metabolismo , DNA/genética , DNA Polimerase I/genética , Saúde da Família , Feminino , Fibroblastos/citologia , Fibroblastos/metabolismo , Perfilação da Expressão Gênica , Doenças Genéticas Ligadas ao Cromossomo X/genética , Doenças Genéticas Ligadas ao Cromossomo X/metabolismo , Células HEK293 , Células HeLa , Humanos , Immunoblotting , Masculino , Microscopia Confocal , Mutação , Análise de Sequência com Séries de Oligonucleotídeos , Linhagem , Transtornos da Pigmentação/genética , Transtornos da Pigmentação/metabolismo , RNA/genética , Reação em Cadeia da Polimerase Via Transcriptase Reversa
2.
Nat Rev Genet ; 20(2): 65-66, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30498232

RESUMO

Lack of family health history experienced by most adopted persons can represent a marked disadvantage. This Comment discusses the role of genetic testing in filling this informational gap and the challenges that need to be overcome.


Assuntos
Adoção , Saúde da Família , Família , Predisposição Genética para Doença , Testes Genéticos , Anamnese , Humanos
3.
Circulation ; 147(17): 1281-1290, 2023 04 25.
Artigo em Inglês | MEDLINE | ID: mdl-36938756

RESUMO

BACKGROUND: Managing disease risk among first-degree relatives of probands diagnosed with a heritable disease is central to precision medicine. A critical component is often clinical screening, which is particularly important for conditions like dilated cardiomyopathy (DCM) that remain asymptomatic until severe disease develops. Nonetheless, probands are frequently ill-equipped to disseminate genetic risk information that motivates at-risk relatives to complete recommended clinical screening. An easily implemented remedy for this key issue has been elusive. METHODS: The DCM Precision Medicine Study developed Family Heart Talk, a booklet designed to help probands with DCM communicate genetic risk and the need for cardiovascular screening to their relatives. The effectiveness of the Family Heart Talk booklet in increasing cardiovascular clinical screening uptake among first-degree relatives was assessed in a multicenter, open-label, cluster-randomized, controlled trial. The primary outcome measured in eligible first-degree relatives was completion of screening initiated within 12 months after proband enrollment. Because probands randomized to the intervention received the booklet at the enrollment visit, eligible first-degree relatives were limited to those who were alive the day after proband enrollment and not enrolled on the same day as the proband. RESULTS: Between June 2016 and March 2020, 1241 probands were randomized (1:1) to receive Family Heart Talk (n=621) or not (n=620) within strata defined by site and self-identified race/ethnicity (non-Hispanic Black, non-Hispanic White, or Hispanic). Final analyses included 550 families (n=2230 eligible first-degree relatives) in the Family Heart Talk arm and 561 (n=2416) in the control arm. A higher percentage of eligible first-degree relatives completed screening in the Family Heart Talk arm (19.5% versus 16.0%), and the odds of screening completion among these first-degree relatives were higher in the Family Heart Talk arm after adjustment for proband randomization stratum, sex, and age quartile (odds ratio, 1.30 [1-sided 95% CI, 1.08-∞]). A prespecified subgroup analysis did not find evidence of heterogeneity in the adjusted intervention odds ratio across race/ethnicity strata (P=0.90). CONCLUSIONS: Family Heart Talk, a booklet that can be provided to patients with DCM by clinicians with minimal additional time investment, was effective in increasing cardiovascular clinical screening among first-degree relatives of these patients. REGISTRATION: URL: https://www. CLINICALTRIALS: gov; Unique identifier: NCT03037632.


Assuntos
Cardiomiopatia Dilatada , Humanos , Cardiomiopatia Dilatada/diagnóstico , Etnicidade , Família , Saúde da Família , Medição de Risco
4.
Am J Med Genet C Semin Med Genet ; 196(1): e32075, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37929633

RESUMO

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.


Assuntos
Adaptação Psicológica , Síndrome de Down , Humanos , Síndrome de Down/genética , Pais , Inquéritos e Questionários , Saúde da Família
5.
Am J Hum Genet ; 108(12): 2368-2384, 2021 12 02.
Artigo em Inglês | MEDLINE | ID: mdl-34800363

RESUMO

The 2-oxoglutarate dehydrogenase-like (OGDHL) protein is a rate-limiting enzyme in the Krebs cycle that plays a pivotal role in mitochondrial metabolism. OGDHL expression is restricted mainly to the brain in humans. Here, we report nine individuals from eight unrelated families carrying bi-allelic variants in OGDHL with a range of neurological and neurodevelopmental phenotypes including epilepsy, hearing loss, visual impairment, gait ataxia, microcephaly, and hypoplastic corpus callosum. The variants include three homozygous missense variants (p.Pro852Ala, p.Arg244Trp, and p.Arg299Gly), three compound heterozygous single-nucleotide variants (p.Arg673Gln/p.Val488Val, p.Phe734Ser/p.Ala327Val, and p.Trp220Cys/p.Asp491Val), one homozygous frameshift variant (p.Cys553Leufs∗16), and one homozygous stop-gain variant (p.Arg440Ter). To support the pathogenicity of the variants, we developed a novel CRISPR-Cas9-mediated tissue-specific knockout with cDNA rescue system for dOgdh, the Drosophila ortholog of human OGDHL. Pan-neuronal knockout of dOgdh led to developmental lethality as well as defects in Krebs cycle metabolism, which was fully rescued by expression of wild-type dOgdh. Studies using the Drosophila system indicate that p.Arg673Gln, p.Phe734Ser, and p.Arg299Gly are severe loss-of-function alleles, leading to developmental lethality, whereas p.Pro852Ala, p.Ala327Val, p.Trp220Cys, p.Asp491Val, and p.Arg244Trp are hypomorphic alleles, causing behavioral defects. Transcript analysis from fibroblasts obtained from the individual carrying the synonymous variant (c.1464T>C [p.Val488Val]) in family 2 showed that the synonymous variant affects splicing of exon 11 in OGDHL. Human neuronal cells with OGDHL knockout exhibited defects in mitochondrial respiration, indicating the essential role of OGDHL in mitochondrial metabolism in humans. Together, our data establish that the bi-allelic variants in OGDHL are pathogenic, leading to a Mendelian neurodevelopmental disease in humans.


Assuntos
Ataxia/genética , Epilepsia/genética , Perda Auditiva/genética , Complexo Cetoglutarato Desidrogenase/genética , Mutação , Transtornos do Neurodesenvolvimento/genética , Transtornos da Visão/genética , Alelos , Animais , Células Cultivadas , Criança , Estudos de Coortes , Análise Mutacional de DNA , Drosophila melanogaster/genética , Saúde da Família , Feminino , Fibroblastos , Humanos , Masculino , Splicing de RNA
6.
Clin Chem ; 70(2): 403-413, 2024 02 07.
Artigo em Inglês | MEDLINE | ID: mdl-38069915

RESUMO

BACKGROUND: Many studies have investigated whether single cardiac biomarkers improve cardiovascular risk prediction for primary prevention but whether a combined approach could further improve risk prediction is unclear. We aimed to test a sex-specific, combined cardiac biomarker approach for cardiovascular risk prediction. METHODS: In the Generation Scotland Scottish Family Health Study, N-terminal pro-B-type natriuretic peptide (NT-proBNP), growth differentiation factor-15 (GDF-15), cardiac troponin I (cTnI), cardiac troponin T (cTnT), and C-reactive protein (CRP) were measured in stored serum using automated immunoassays. Sex-specific Cox models that included SCORE2 risk factors evaluated addition of single and combined biomarkers for prediction of major adverse cardiovascular events (MACE). Combined biomarker models were compared to a baseline model that included SCORE2 risk factors. RESULTS: The study population comprised 18 383 individuals (58.9% women, median age of 48 years [25th-75th percentile, 35-58 years]). During the median follow up of 11.6 (25th-75th percentile, 10.8-13.0) years, MACE occurred in 942 (5.1%) individuals. The greatest increase in discrimination with addition of individual biomarkers to the base model was for women GDF-15 and for men NT-proBNP (change in c-index: + 0.010 for women and +0.005 for men). For women, combined biomarker models that included GDF-15 and NT-proBNP (+0.012) or GDF-15 and cTnI (+0.013), but not CRP or cTnT, further improved discrimination. For men, combined biomarker models that included NT-proBNP and GDF-15 (+0.007), NT-proBNP and cTnI (+0.006), or NT-proBNP and CRP (+0.008), but not cTnT, further improved discrimination. CONCLUSIONS: A combined biomarker approach, particularly the use of GDF-15, NT-proBNP and cTnI, further refined cardiovascular risk estimates.


Assuntos
Doenças Cardiovasculares , Fator 15 de Diferenciação de Crescimento , Masculino , Humanos , Feminino , Pessoa de Meia-Idade , Saúde da Família , Biomarcadores , Peptídeo Natriurético Encefálico , Proteína C-Reativa/metabolismo , Fragmentos de Peptídeos , Troponina T , Prognóstico
7.
Int J Equity Health ; 23(1): 62, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38504281

RESUMO

BACKGROUND: Adverse childhood experiences (ACEs), in combination with adverse community environments, can result in traumatic stress reactions, increasing a person's risk for chronic physical and mental health conditions. Family resilience refers to the ability of families to withstand and rebound from adversity; it involves coping with disruptions as well as positive growth in the face of sudden or challenging life events, trauma, or adversities. This study aimed to identify factors contributing to family and community resilience from the perspective of families who self-identified as having a history of adversity and being resilient during the COVID-19 pandemic. METHODS: This study used Photovoice, a visual participatory research method which asks participants to take photographs to illustrate their responses to a research question. Participants consisted of a maximum variation sample of families who demonstrated family level resilience in the context of the pair of ACEs during the COVID-19 pandemic. Family members were asked to collect approximately five images or videos that illustrated the facilitators and barriers to well-being for their family in their community. Semi-structured in-depth interviews were conducted using the SHOWeD framework to allow participants to share and elucidate the meaning of their photos. Using thematic analysis, two researchers then independently completed line-by-line coding of interview transcripts before collaborating to develop consensus regarding key themes and interpretations. RESULTS: Nine families were enrolled in the study. We identified five main themes that enhanced family resilience: (1) social support networks; (2) factors fostering children's development; (3) access and connection to nature; (4) having a space of one's own; and (5) access to social services and community resources. CONCLUSIONS: In the context of additional stresses related to the COVID-19 pandemic, resilient behaviours and strategies for families were identified. The creation or development of networks of intra- and inter-community bonds; the promotion of accessible parenting, housing, and other social services; and the conservation and expansion of natural environments may support resilience and health.


Assuntos
COVID-19 , Resiliência Psicológica , Criança , Humanos , Saúde da Família , Pandemias , Poder Familiar/psicologia
8.
Support Care Cancer ; 32(4): 211, 2024 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-38443746

RESUMO

PURPOSE: Family resilience helps cancer-affected families overcome challenges and may influence an individual's fear of cancer recurrence (FCR). Identifying distinct classes of family resilience among lung cancer patients is crucial for tailored interventions. This study aimed to identify latent classes of family resilience in lung cancer patients and explore their relationships with FCR. METHODS: Three hundred ten lung cancer patients from three hospitals in Fujian were recruited from June to September 2021. Clinical data were extracted from medical records, while sociodemographic details, family resilience, and FCR were self-reported. A latent class analysis was performed to identify family resilience classes. RESULTS: A 4-class solution showed the best fit. Compared to Class 1, the patients who had no comorbidities (ORs = 3.480-16.005) had an increased likelihood of belonging to Class 2 and 3, while those who were not family breadwinners (ORs = 0.118-0.176) had a decreased likelihood. Further, the patients who (1) did not lack interest/pleasure in doing things during the past 2-week period (OR = 7.057), (2) were never smokers (OR = 6.230), and (3) were urban residents (OR = 8.985) had an increased likelihood of belonging to Class 4, while those who were (1) male (OR = 0.167), (2) not the family breadwinner (OR = 0.152), and (3) had none or only one child (OR = 0.203) had a decreased likelihood of belonging to Class 4. The FCR level differed significantly among these four classes. CONCLUSION: Our study identified four distinct classes of family resilience among Chinese lung cancer patients. FCR severity decreased with increasing levels of family resilience.


Assuntos
Neoplasias Pulmonares , Resiliência Psicológica , Criança , Humanos , Masculino , Estudos Transversais , Análise de Classes Latentes , Saúde da Família , Medo
9.
BMC Psychiatry ; 24(1): 206, 2024 Mar 14.
Artigo em Inglês | MEDLINE | ID: mdl-38486183

RESUMO

BACKGROUND: There may be unexplored interactions between family health, personality, and smoking that could help provide new perspectives on tobacco control. OBJECTIVE: To examine the relationship between the health of one's family and their smoking habits, as well as investigate the potential influence of personality on this relationship. METHODS: For this cross-sectional investigation, a national survey conducted in China in 2022 recruited a total of 21,916 individuals. The Family Health Scale was utilized to assess the health of the family. The 10-item Big Five Inventory scale was utilized to assess the Big five personality traits. The relationship between big five personality, family health, and smoking were investigated using binary and linear logistic regression. The indirect effects mediated by Big five personality were analyzed using mediation analysis with Sobel tests, and the indirect effects were composited using the Karlson-Holm-Breen method. RESULTS: The overall prevalence of smoking in the study population was 14.87%, 26.19% for males and 3.54% for females. Urban and rural smoking prevalence was 13.81% and 16.10% respectively. Binary logistic regression analysis revealed a significant negative relationship between smoking and family health (odds ratio 0.964, 95% CI 0.959, 0.970, P < 0.001) with covariates controlled. The Karlson-Holm-Breen composition facilitated the connection between extraversion (47.81%) and nervousness (52.19%). CONCLUSIONS: Preventive interventions for smoking behavior should prioritize family health and the Big five personality as significant areas to focus on. According to this study, in addition to implementing various interventions for different personalities, family health should be strengthened to reduce smoking behavior.


Assuntos
População do Leste Asiático , Saúde da Família , Personalidade , Masculino , Feminino , Humanos , Estudos Transversais , Fumar/epidemiologia
10.
BMC Psychiatry ; 24(1): 76, 2024 Jan 26.
Artigo em Inglês | MEDLINE | ID: mdl-38279114

RESUMO

BACKGROUND: Psychological distress is common in maintenance hemodialysis patients, and high psychological resilience can promote psychological well-being. The current research focuses on psychological resilience protective factors such as family resilience and social support. However, the trajectories of psychological resilience, family resilience, and social support over time and their longitudinal relationships in maintenance hemodialysis patients have not been fully explored yet. Therefore, this study aims to explore the longitudinal relationship between these factors. METHODS: Patients who received regular hemodialysis treatment for more than three months at dialysis centers of three tertiary hospitals in Zhejiang, China, were recruited from September to December 2020. A total of 252 patients who met the inclusion and exclusion criteria completed three follow-up surveys, including social support, family resilience, and psychological resilience assessments. A repeated measures ANOVA was used to explore differences in their respective scores at different time points. The cross-lagged analysis was performed in AMOS using the maximum likelihood method to examine the the reciprocal predictive relationships between these factors. RESULTS: Social support and psychological resilience remained relatively stable over time, whereas family resilience indicated a little increasing trend. According to the cross-lagged analysis, higher T1 social support predicted higher family resilience at T2 [ß = 0.123, 95% CI (0.026-0.244)]. Further, the effects of T2 social support to T3 family resilience [ß = 0.194, 95%CI (0.039-0.335)] and psychological resilience [ß = 0.205, 95%CI (0.049-0.354)] were significant. Finally, the effects of T2 family resilience to T3 social support [ß = 0.122, 95%CI (0.010-0.225)] and psychological resilience [ß = 0.244, 95%CI (0.119-0.359)] were also significant. CONCLUSIONS: The study showed that the directionality of the relationship appears to be from social support or family resilience to patients' psychological resilience but not vice versa. This finding reminds healthcare professionals to emphasize the vital role of social and family resources in providing appropriate support and interventions for maintenance hemodialysis patients to promote psychological resilience and mental health development.


Assuntos
Resiliência Psicológica , Humanos , Saúde da Família , Estudos Longitudinais , Apoio Familiar , Apoio Social , Diálise Renal/psicologia
11.
BMC Pregnancy Childbirth ; 24(1): 227, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38566095

RESUMO

BACKGROUND: Group prenatal care (GPC) has been shown to have a positive impact on social support, patient knowledge and preparedness for birth. We developed an interprofessional hybrid model of care whereby the group perinatal care (GPPC) component was co-facilitated by midwives (MW) and family medicine residents (FMR) and alternating individual visits were provided by family physicians (FP's) within our academic family health team (FHT) In this qualitative study, we sought to explore the impact of this program and how it supports patients through pregnancy and the early newborn period. METHODS: Qualitative study that was conducted using semi-structured telephone interviews with 18 participants who had completed GPPC in the Mount Sinai Academic Family Health Team in Toronto, Canada and delivered between November 2016 and October 2018. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted by team members using grounded theory. RESULTS: Four over-arching themes emerged from the data: (i) Participants highly valued information they received from multiple trusted sources, (ii) Participants felt well cared for by the collaborative and coordinated interprofessional team, (iii) The design of GPPC enabled a shared experience, allowing for increased support of the pregnant person, and (iv) GPPC facilitated a supportive transition into the community which positively impacted participants' emotional well- being. CONCLUSIONS: The four constructs of social support (emotional, informational, instrumental and appraisal) were central to the value that participants found in GPPC. This support from the team of healthcare providers, peers and partners had a positive impact on participants' mental health and helped them face the challenges of their transition to parenthood.


Assuntos
Saúde da Família , Assistência Perinatal , Gravidez , Feminino , Recém-Nascido , Criança , Humanos , Cuidado Pré-Natal , Apoio Social , Pesquisa Qualitativa , Avaliação de Resultados da Assistência ao Paciente , Equipe de Assistência ao Paciente
12.
BMC Nephrol ; 25(1): 83, 2024 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-38443869

RESUMO

BACKGROUND: Primary caregivers of hemodialysis patients suffer from varying degrees of stress from their patients. Caring for hemodialysis patients can expose caregivers to many problems, leading to an increased burden of care and even impacting the quality of care. The purpose of our study was to examine whether family resilience could be a mediating variable moderating the relationship between patient coping styles and caregiver burden. METHODS: The study was a cross-sectional and descriptive-analytical study that interviewed 173 pairs of hemodialysis patients and their caregivers at a blood purification center in a public hospital in China. The Brief Coping Styles Scale (Chinese version) was used to assess individuals' coping styles for disease and treatment. From the caregiver's perspective, the Family Resilience Assessment Scale (Chinese version) was used to understand the resilience of families, and the Zarit Caregiver Burden Scale was used to capture the caregiver's subjective experience of burden. Statistical analyses were conducted using SPSS version 23 and Amos version 26 to analyze the relationships between variables to examine for correlation and construct mediated effects models. RESULTS: Coping styles showed a significant positive correlation with family resilience (r = 0.347, P < 0.01) and a negative correlation with caregiver burden (r = -0.379, P < 0.01). A significant negative correlation was found between family resilience and caregiver burden (r = -0.503, P < 0.01). In the mediation model, patient coping styles directly impacted caregiver burden significantly (95% CI [-0.372, -0.058]), and coping styles indirectly impacted caregiver burden by family resilience in a significant way (95% CI [-0.275, -0.098]). CONCLUSIONS: Patient coping styles directly affect caregiver burden. Family resilience is a mediating variable between patients' coping styles and the burden on caregivers.


Assuntos
Sobrecarga do Cuidador , Testes Psicológicos , Resiliência Psicológica , Autorrelato , Humanos , Estudos Transversais , Saúde da Família , Capacidades de Enfrentamento , Diálise Renal
13.
BMC Public Health ; 24(1): 817, 2024 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-38491454

RESUMO

BACKGROUND: The caregiver burden frequently experienced by family members tending to advanced cancer patients significantly impacts their psychological well-being and quality of life (QoL). Although family resilience might function as a mitigating factor in this relationship, its specific role remains to be elucidated. This study aims to probe the mediating effect of psychological distress on the relationship between caregiver burden and QoL, as well as the moderating effect of family resilience. METHODS: A cross-sectional study was conducted between June 2020 and March 2021 in five tertiary hospitals in China. Data were collected on caregiver burden, family resilience, psychological distress (including anxiety and depression), and QoL. Moderated mediation analysis was performed. RESULTS: Data analysis included 290 caregivers. It confirmed the mediating role of psychological distress in the caregiver burden-QoL relationship (P < 0.001). Both overall family resilience and the specific dimension of family communication and problem-solving (FCPS) demonstrated significant moderating effects on the "psychological distress/anxiety-QoL" paths (P < 0.05). The utilization of social and economic resources (USER) significantly moderated the association between depression and QoL (P < 0.05). CONCLUSIONS: The study corroborates psychological distress's mediation between caregiver burden and QoL and family resilience's moderation between psychological distress and QoL. It underscores the need for minimizing psychological distress and bolstering family resilience among caregivers of advanced cancer patients. Accordingly, interventions should be tailored, inclusive of psychological assistance and promotion of family resilience, particularly focusing on FCPS and USER, to augment the caregivers' well-being and QoL.


Assuntos
Neoplasias , Angústia Psicológica , Resiliência Psicológica , Humanos , Qualidade de Vida/psicologia , Cuidadores/psicologia , Sobrecarga do Cuidador , Saúde da Família , Estudos Transversais , Análise de Mediação , Neoplasias/terapia , Neoplasias/psicologia
14.
J Clin Child Adolesc Psychol ; 53(1): 83-97, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-36701384

RESUMO

OBJECTIVE: This study investigated COVID-19 stressors and silver linings, familism values, familial resilience, and coping, and their relation to internalizing symptoms among Latinx youth. METHOD: A community sample of 135 Latinx adolescents completed online surveys 6-months apart (M age = 16, 59.3% female; majority U.S-born). RESULTS: COVID-19 stress was associated with more depressive (ß = .18, p = .027) and anxiety (ß = .21, p = .010) symptoms. However, COVID-19 stress was related to higher levels of depressive and anxiety symptoms only for youth who engaged in low (ß = .38, p < .001; ß = .38, p = .001) and medium (ß = .19, p = .004; ß = .22, p = .011) levels of problem-focused engagement coping. Higher levels of family resilience were associated with lower cross-sectional depressive symptoms (ß = -.28, p = .004). For longitudinal models, a significant relation between COVID-19 stress and problem-focused engagement predicted Time 2 depressive symptoms (ß = -.20, p < .041). CONCLUSION: Latinx youth who experienced high levels of COVID-19 stress who enacted problem-focused coping fared better across the pandemic. Familial resilience did not carry the same longitudinal benefit but did bolster mental health concurrently. Clinicians should endeavor to buttress familial resilience processes in addition to problem-engaged coping for Latinx youth in treatment.


Assuntos
COVID-19 , Resiliência Psicológica , Adolescente , Feminino , Humanos , Masculino , Estudos Transversais , Saúde da Família , Saúde Mental , COVID-19/epidemiologia , Capacidades de Enfrentamento , Hispânico ou Latino
15.
Matern Child Health J ; 28(2): 333-343, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37989933

RESUMO

BACKGROUND: Evidence-based home visiting programs are designed to improve maternal child health. Nurse-Family Partnership (NFP) is a model evidence-based home visiting program, shown to improve pregnancy outcomes, child development, and economic self-sufficiency for first-time mothers and their families experiencing social and economic adversities, enrolling them early in pregnancy. Recently, NFP has expanded its services to multiparous women (previous live births) and enrolling women past 28 weeks gestation (late registrants) in selected agencies in Florida since 2021. OBJECTIVE: To study the process and impacts of expanding NFP to expanded populations (multiparous and/or late registrants), we convened a diverse Advisory Committee to guide the NFP expansion evaluation in Florida. METHODS: This study employed a modified e-Delphi method with three rounds of data collection, to engage diverse partners to identify process and impact outcomes for the NFP expansion evaluation. RESULTS: Child maltreatment was identified as the highest priority outcome. Process outcomes included program reach, client enrollment, and client engagement, while impact outcomes included maternal physical health, maternal mental health and substance use, birth outcomes, and breastfeeding practices. The Advisory Committee further identified potential data sources to measure these outcomes. CONCLUSIONS FOR PRACTICE: Identifying and selecting key process and impact outcomes using a community-engaged process is necessary to ensure equal buy-in from all partners and to inform rigorous program evaluation. This study showed that using methods such as e-Delphi is feasible and effective for achieving thoughtful and rigorous decision-making, even in times of uncertainty like the COVID-19 pandemic.


Assuntos
Maus-Tratos Infantis , Saúde da Família , Gravidez , Criança , Humanos , Feminino , Técnica Delphi , Pandemias , Mães , Visita Domiciliar
16.
Matern Child Health J ; 28(8): 1413-1421, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38896148

RESUMO

INTRODUCTION: The COVID-19 pandemic affected child health behaviors, leading to worse physical health. Given the importance of good family health in improved child health outcomes, this secondary cohort analysis tested the hypothesis that family health would improve from baseline to 12-week follow-up after participation in a novel family nutrition program. METHODS: Diverse parent-child dyads participated in a home-based virtual Teaching Kitchen Outreach (vTKO) program (11 weekly healthy, low-cost recipes, cooking videos, and associated groceries delivered). The primary outcome was the Family Healthy Lifestyle Subscale (FHLS). Secondary outcomes were parent and child nutrition, and food insecurity. Statistical testing and modeling were used to evaluate pre-post outcomes. RESULTS: Of 123 enrolled dyads, 114 (93%) had sufficient data for analysis. Participants were 11% Hispanic, 54% Black, and 28% White; 31% completed high school or less; and 30% indicated food insecurity. Cohort mean pre-post FHLS scores significantly increased (25.5 vs. 27.3; p < 0.001). There were significant improvements in parent nutrition (p < 0.001) and child nutrition (p = 0.02 to < 0.001), but not in food security. After adjusting for baseline covariates, tobit regression found statistically significant pre-post FHLS differences (2.3; 95% CI=[1.4, 3.3]; p < 0.001). DISCUSSION: Participants in the novel home-based vTKO program reported improved family health over 12 weeks.


Assuntos
COVID-19 , Saúde da Família , Humanos , COVID-19/prevenção & controle , COVID-19/epidemiologia , Feminino , Masculino , Criança , Adulto , SARS-CoV-2 , Pandemias , Insegurança Alimentar , Estado Nutricional , Pré-Escolar , Estudos de Coortes , Promoção da Saúde/métodos , Pais/educação , Pais/psicologia
17.
J Med Internet Res ; 26: e50012, 2024 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-38373031

RESUMO

BACKGROUND: With the advent of a new era for health and medical treatment, characterized by the integration of mobile technology, a significant digital divide has surfaced, particularly in the engagement of older individuals with mobile health (mHealth). The health of a family is intricately connected to the well-being of its members, and the use of media plays a crucial role in facilitating mHealth care. Therefore, it is important to examine the mediating role of media use behavior in the connection between the family health of older individuals and their inclination to use mHealth devices. OBJECTIVE: This study aims to investigate the impact of family health and media use behavior on the intention of older individuals to use mHealth devices in China. The study aims to delve into the intricate dynamics to determine whether media use behavior serves as a mediator in the relationship between family health and the intention to use mHealth devices among older adults. The ultimate goal is to offer well-founded and practical recommendations to assist older individuals in overcoming the digital divide. METHODS: The study used data from 3712 individuals aged 60 and above, sourced from the 2022 Psychology and Behavior Investigation of Chinese Residents study. Linear regression models were used to assess the relationships between family health, media use behavior, and the intention to use mHealth devices. To investigate the mediating role of media use behavior, we used the Sobel-Goodman Mediation Test. This analysis focused on the connection between 4 dimensions of family health and the intention to use mHealth devices. RESULTS: A positive correlation was observed among family health, media use behavior, and the intention to use mHealth devices (r=0.077-0.178, P<.001). Notably, media use behavior was identified as a partial mediator in the relationship between the overall score of family health and the intention to use mHealth devices, as indicated by the Sobel test (z=5.451, P<.001). Subgroup analysis further indicated that a complete mediating effect was observed specifically between family health resources and the intention to use mHealth devices in older individuals with varying education levels. CONCLUSIONS: The study revealed the significance of family health and media use behavior in motivating older adults to adopt mHealth devices. Media use behavior was identified as a mediator in the connection between family health and the intention to use mHealth devices, with more intricate dynamics observed among older adults with lower education levels. Going forward, the critical role of home health resources must be maximized, such as initiatives to develop digital education tailored for older adults and the creation of media products specifically designed for them. These measures aim to alleviate technological challenges associated with using media devices among older adults, ultimately bolstering their inclination to adopt mHealth devices.


Assuntos
Povo Asiático , Saúde da Família , Intenção , Telemedicina , Idoso , Humanos , Estudos Transversais , Telemedicina/instrumentação , Telemedicina/métodos
18.
J Med Internet Res ; 26: e55164, 2024 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-39348188

RESUMO

BACKGROUND: Family health history (FHx) is an important predictor of a person's genetic risk but is not collected by many adults in the United States. OBJECTIVE: This study aims to test and compare the usability, engagement, and report usefulness of 2 web-based methods to collect FHx. METHODS: This mixed methods study compared FHx data collection using a flow-based chatbot (KIT; the curious interactive test) and a form-based method. KIT's design was optimized to reduce user burden. We recruited and randomized individuals from 2 crowdsourced platforms to 1 of the 2 FHx methods. All participants were asked to complete a questionnaire to assess the method's usability, the usefulness of a report summarizing their experience, user-desired chatbot enhancements, and general user experience. Engagement was studied using log data collected by the methods. We used qualitative findings from analyzing free-text comments to supplement the primary quantitative results. RESULTS: Participants randomized to KIT reported higher usability than those randomized to the form, with a mean System Usability Scale score of 80.2 versus 61.9 (P<.001), respectively. The engagement analysis reflected design differences in the onboarding process. KIT users spent less time entering FHx information and reported more conditions than form users (mean 5.90 vs 7.97 min; P=.04; and mean 7.8 vs 10.1 conditions; P=.04). Both KIT and form users somewhat agreed that the report was useful (Likert scale ratings of 4.08 and 4.29, respectively). Among desired enhancements, personalization was the highest-rated feature (188/205, 91.7% rated medium- to high-priority). Qualitative analyses revealed positive and negative characteristics of both KIT and the form-based method. Among respondents randomized to KIT, most indicated it was easy to use and navigate and that they could respond to and understand user prompts. Negative comments addressed KIT's personality, conversational pace, and ability to manage errors. For KIT and form respondents, qualitative results revealed common themes, including a desire for more information about conditions and a mutual appreciation for the multiple-choice button response format. Respondents also said they wanted to report health information beyond KIT's prompts (eg, personal health history) and for KIT to provide more personalized responses. CONCLUSIONS: We showed that KIT provided a usable way to collect FHx. We also identified design considerations to improve chatbot-based FHx data collection: First, the final report summarizing the FHx collection experience should be enhanced to provide more value for patients. Second, the onboarding chatbot prompt may impact data quality and should be carefully considered. Finally, we highlighted several areas that could be improved by moving from a flow-based chatbot to a large language model implementation strategy.


Assuntos
Anamnese , Humanos , Feminino , Masculino , Anamnese/métodos , Anamnese/estatística & dados numéricos , Adulto , Saúde da Família , Inquéritos e Questionários , Pessoa de Meia-Idade , Coleta de Dados/métodos , Internet
19.
Health Res Policy Syst ; 22(1): 12, 2024 Jan 22.
Artigo em Inglês | MEDLINE | ID: mdl-38254173

RESUMO

BACKGROUND: Indigenous tribal people experience lower coverage of maternal, newborn and child healthcare (MNCH) services worldwide, including in India. Meanwhile, Indian tribal people comprise a special sub-population who are even more isolated, marginalized and underserved, designated as particularly vulnerable tribal groups (PVTGs). However, there is an extreme paucity of evidence on how this most vulnerable sub-population utilizes health services. Therefore, we aimed to estimate MNCH service utilization by all the 13 PVTGs of the eastern Indian state of Odisha and compare that with state and national rates. METHODS: A total of 1186 eligible mothers who gave birth to a live child in last 5 years, were interviewed using a validated questionnaire. The weighted MNCH service utilization rates were estimated for antenatal care (ANC), intranatal care (INC), postnatal care (PNC) and immunization (for 12-23-month-old children). The same rates were estimated for state (n = 7144) and nationally representative samples (n = 176 843) from National Family Health Survey-5. RESULTS: The ANC service utilization among PVTGs were considerably higher than national average except for early pregnancy registration (PVTGs 67% versus national 79.9%), and 5 ANC components (80.8% versus 82.3%). However, their institutional delivery rates (77.9%) were lower than averages for Odisha (93.1%) and India (90.1%). The PNC and immunization rates were substantially higher than the national averages. Furthermore, the main reasons behind greater home delivery in the PVTGs were accessibility issues (29.9%) and cultural barriers (23.1%). CONCLUSION: Ours was the first study of MNCH service utilization by PVTGs of an Indian state. It is very pleasantly surprising to note that the most vulnerable subpopulation of India, the PVTGs, have achieved comparable or often greater utilization rates than the national average, which may be attributable to overall significantly better performance by the Odisha state. However, PVTGs have underperformed in terms of timely pregnancy registration and institutional delivery, which should be urgently addressed.


Assuntos
Serviços de Saúde da Criança , Gravidez , Criança , Recém-Nascido , Humanos , Feminino , Lactente , Pré-Escolar , Índia , Saúde da Família , Instalações de Saúde , Mães
20.
J Clin Nurs ; 33(4): 1409-1420, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37908060

RESUMO

AIMS: To investigate the trajectory, influencing factors and dynamic relationships between fear of cancer recurrence (FCR) and quality of life (QOL) in lung cancer patients. DESIGN: Prospective longitudinal study. METHODS: Longitudinal data from 310 lung cancer patients across three hospitals in China were assessed at 1, 3, 6 and 12 months postoperatively (T1 -T4 ). Descriptive statistics characterised patient demographics, clinical characteristics, levels of FCR and QOL. A linear mixed-effects model was employed to analyse FCR trajectories, identify influencing factors on these trajectories, and predict the impact of FCR on QOL. RESULTS: FCR changed significantly over time, with a slight decrease during T1 -T2 , an increase at T3 and gradual decline at T4 . Higher fear levels were associated with female sex, suburban or rural residency, being a family breadwinner, presence of comorbidities and negative coping behaviours, and low family resilience. QOL negatively correlated with FCR, and FCR predicted lower QOL. CONCLUSIONS: At 3 and 6 months postoperatively, lung cancer patients, especially women, suburban or rural residents, family breadwinners, those with comorbidities, negative coping behaviours and low family resilience, reported high levels of FCR. Healthcare providers should pay special attention to lung cancer patients especially during the period of 3-6 months post-surgery and offer tailored interventions to improve their QOL. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Understanding the FCR trajectories, its influencing factors and its negative impacts on QOL can guide the development of targeted interventions to reduce fear and enhance well-being in patients with cancer. IMPACT: Identifying the trajectories and influencing factors of fear of lung cancer recurrence in patients at different time points informs future research on targeted interventions to improve QOL. REPORTING METHOD: The study adhered to the guidelines outlined in the Statement on Reporting Observational Longitudinal Research.


Assuntos
Neoplasias Pulmonares , Resiliência Psicológica , Humanos , Feminino , Qualidade de Vida , Neoplasias Pulmonares/cirurgia , Estudos Longitudinais , Estudos Prospectivos , Saúde da Família , Medo , Recidiva Local de Neoplasia
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