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1.
Cereb Cortex ; 34(1)2024 01 14.
Artigo em Inglês | MEDLINE | ID: mdl-38163444

RESUMO

Parental feedback affects children in multiple ways. However, little is known about how children, family, and feedback types affect parental feedback neural mechanisms. The current study used functional near-infrared spectroscopy-based hyperscanning to observe 47 mother-daughter pairs's (mean age of mothers: 35.95 ± 3.99 yr old; mean age of daughters: 6.97 ± 0.75 yr old) brain synchronization in a jigsaw game under various conditions. Between parental negative feedback and praise conditions, mother-daughter brain in supramarginal gyrus, left dorsolateral prefrontal cortex, right inferior frontal gyrus, and right primary somatic (S1) differed. When criticized, conformity family-communication-patterned families had much worse brain synchronization in S1, left dorsolateral prefrontal cortex, and right Wernicke's region than conversational families. Resilient children had better mother-child supramarginal gyrus synchronicity under negative feedback. This study supports the importance of studying children's neurological development in nurturing environments to assess their psychological development.


Assuntos
Encéfalo , Córtex Pré-Frontal , Feminino , Humanos , Retroalimentação , Córtex Pré-Frontal/diagnóstico por imagem , Pais , Mães , Mapeamento Encefálico
2.
BMC Public Health ; 24(1): 1733, 2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38943094

RESUMO

BACKGROUND: Childhood obesity is increasingly recognized as a major public health challenge worldwide, and excessive sedentary screen time is emerging as a key risk factor. This study aimed to assess the recreational screen sedentary time of Chinese primary school-aged children and investigate the relationship between screen-related family factors and the outcome variable. METHODS: Our study used data from a cross-sectional survey collected from fifth-grade students and their parents in Beijing, China, from April to May 2018 (n = 2,373). The questions included basic demographic information, family socioeconomic status, students' and parents' sedentary and exercising habits, within-family communicational factors, and health belief patterns. The recreational screen sedentary time of the children was compared across demographic groups. The study employed multivariate linear regression models to examine associations between children's screen time and various family factors, as well as the moderating effect of overall family communication. RESULTS: Our findings revealed an average daily recreational screen sedentary time of 2.4 h among participants. Screen time significantly varied across demographic categories, including children's sex, age, residence, parents' education, household income, family size, and primary family member. After adjustment, the proportion of child-owned digital devices (p < 0.01), child's personal room (p < 0.05), family screen-viewing together (p < 0.01), and parental screen time (p < 0.01) were positively related to children's recreational sedentary screen time. Parental restrictions on screen time (p < 0.001) and attitudes toward reducing sitting time (p < 0.01) were correlated with a decrease in children's screen time. The overall family communication environment significantly moderated the effects of parental practice of restricting children's screen time (p < 0.001), positive reinforcement by parents (p < 0.05), and parents' recreational sedentary screen time (p < 0.001). CONCLUSIONS: Our findings underscored the significance of family dynamics, parental practices, and communication in shaping children's screen time behaviors, providing valuable insights for tailored interventions and strategies to reduce childhood obesity.


Assuntos
Comunicação , Tempo de Tela , Comportamento Sedentário , Humanos , Estudos Transversais , Masculino , Feminino , Criança , China , Pequim , Pais/psicologia , Obesidade Infantil/epidemiologia , Inquéritos e Questionários , Exercício Físico
3.
J Genet Couns ; 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38504135

RESUMO

The limited literature on Asian family communication of hereditary cancer risk and cascade genetic testing for pathogenic variants (PVs) in BRCA1 and BRCA2 has reported that Asian patients have selective communication of test results and lower cascade testing rates. To better understand the factors that impact communication and cascade testing in Asian families, we conducted an in-depth qualitative study guided by the Health Belief Model. Participants with heterozygous PVs in ATM, BRCA1, BRCA2, CHEK2, or PALB2, who identified their family's origins to an Asian country, were recruited from the Stanford Cancer Genetics Research Database in October-November 2021. Utilizing a constructivist approach, we conducted sixteen semi-structured interviews around family communication and cascade genetic testing. The research team analyzed the transcript data using a reflexive thematic approach. Extensive discussions between the research team resulted in three primary themes presented in this paper: (1) the role of family health beliefs in cascade genetic testing, (2) changes in communication as a result of genetic testing, and (3) genetics providers' role in supporting family discussions on cascade genetic testing. Certain health beliefs, such as perceived susceptibility to cancer and self-efficacy to take action, were co-created by family members and these shared beliefs influenced decisions about genetic testing, family communication, and family support during the cascade genetic testing process. Participants shared strategies for how genetics providers can prepare Asian patients for more effective conversations with relatives and better address potential testing barriers by tailoring information and providing anticipatory guidance. This study represents an important contribution to the literature about cascade testing among an underrepresented group. Shared family health beliefs about genetic testing may be particularly relevant for this community and these findings can inform strategies to increase cascade genetic testing in Asian families.

4.
Reprod Health ; 21(1): 135, 2024 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-39294666

RESUMO

BACKGROUND: In recent years, there has been a significant decrease in the desire to have children among Chinese women of childbearing age, particularly for the first child. This trend has sparked a growing interest in understanding the underlying factors. Although perceived stress has been speculated as an important factor in decreasing fertility intention, the precise mechanism is unclear. The current study, therefore, aims to investigate the psychological mechanisms linking perceived stress to fertility intentions among women of childbearing age without children, a topic of significant relevance and importance. METHODS: Data were sourced from Chinese residents' psychology and behavior investigation (PBICR-2022). A multistage random sampling method was applied to recruit eligible participants. The Mplus8.3 software constructed a chain path model among the variables. RESULTS: The median fertility intention was 30(3-60) on a scale of 0 to 100. The mediation analysis revealed a significant negative influence of perceived stress on fertility intention (ß = - 0.076, P < 0.001). Additionally, a more intricate pattern of chain-mediating effect was observed involving perceived stress, anxiety (ß = 0.037, P < 0.05), family communication (ß = 0.106, P < 0.001), subjective well-being (ß = 0.088, P < 0.001) and fertility intention. CONCLUSIONS: Perceived stress not only directly suppressed fertility intention but also indirectly affected it through anxiety, family communication, and subjective well-being. Effective family communication and favorable subjective well-being emerged as factors that could augment fertility intentions among women of childbearing age without children.


Assuntos
Ansiedade , Fertilidade , Intenção , Estresse Psicológico , Humanos , Feminino , Estresse Psicológico/psicologia , Adulto , Ansiedade/psicologia , Adulto Jovem , China , Comunicação , Adolescente
5.
BMC Med Inform Decis Mak ; 24(1): 139, 2024 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-38802921

RESUMO

BACKGROUND: Few studies have been conducted on the usage of telehealth focusing on consultations between patients' families and physicians. This study aimed to identify the usage and limitations of online medical consultations with patients' families compared to the traditional in-person consultations. METHODS: We conducted a prospective cohort study from April 1, 2020, to September 30, 2021, at an educational acute-care hospital in Japan. The study included hospitalized patients aged 20 years or older and their family members for whom an online or in-person medical consultation between the family member and physician was conducted during the hospitalization period. The primary endpoints assessed were three topics pertaining to medical consultation: medical conditions and treatment plans, policies for life-threatening events, and post-discharge support. The secondary endpoint was the number of consultations required. RESULTS: Online consultations and traditional in-person consultations were provided to 58 and 53 patients' families, respectively. Of the patients in the online consultation group who underwent multiple consultations, 46 (79%) also underwent in-person consultations. Regarding the topics, all the patients' families in both consultation groups had consultations on medical conditions and treatment plans; regarding the policy for life-threatening events, 47% of patient families in the online consultation group were consulted compared to 53% of those in the in-person group. Regarding post-discharge support, 59% of patient families in the online group were consulted compared to 40% in the in-person group. In the online consultation group of 58 patients' families, 188 consultations were conducted, including 95 online and 93 in-person consultations. Consultations on policy for life-threatening events were significantly more frequent in in-person consultations than in online consultations (p < 0.05). Regarding post-discharge support, online consultations were significantly more frequent than in-person consultations (p < 0.05). The number of family members who attended online consultations was significantly higher than those who attended in-person consultations (p < 0.05). CONCLUSIONS: Online consultation between the physician and patient's family may be an alternative to in-person consultation for explaining medical conditions and treatment plans. However, in-person consultation still plays an important role in sensitive topics, such as policy consultation for life-threatening events.


Assuntos
Família , Humanos , Feminino , Masculino , Estudos Prospectivos , Pessoa de Meia-Idade , Adulto , Idoso , Japão , Telemedicina , Consulta Remota , Comunicação por Videoconferência , Encaminhamento e Consulta , Idoso de 80 Anos ou mais
6.
Pediatr Cardiol ; 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38700711

RESUMO

Parents of children in the pediatric cardiac intensive care unit (CICU) are often unprepared for family meetings (FM). Clinicians often do not follow best practices for communicating with families, adding to distress. An interprofessional team intervention for FM is feasible, acceptable, and positively impacts family preparation and conduct of FM in the CICU. We implemented a family- and team-support intervention for conducting FM and conducted a pretest-posttest study with parents of patients selected for a FM and clinicians. We measured feasibility, fidelity to intervention protocol, and parent acceptability via questionnaire and semi-structured interviews. Clinician behavior in meetings was assessed through semantic content analyses of meeting transcripts tracking elicitation of parental concerns, questions asked of parents, and responses to parental empathic opportunities. Logistic and ordinal logistic regression assessed intervention impact on clinician communication behaviors in meetings comparing pre- and post-intervention data. Sixty parents (95% of approached) were enrolled, with collection of 97% FM and 98% questionnaire data. We accomplished > 85% fidelity to intervention protocol. Most parents (80%) said the preparation worksheet had the right amount of information and felt positive about families receiving this worksheet. Clinicians were more likely to elicit parental concerns (adjusted odds ratio = 3.42; 95%CI [1.13, 11.0]) in post-intervention FM. There were no significant differences in remaining measures. Implementing an interprofessional team intervention to improve family preparation and conduct of FM is locally feasible, acceptable, and changes clinician behaviors. Future research should assess broader impact of training on clinicians, patients, and families.

7.
J Clin Nurs ; 33(7): 2525-2543, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38476035

RESUMO

AIM: To determine and describe what interventions exist to improve nurse-family communication during the waiting period of an emergency department visit. BACKGROUND: Communication between nurses and families is an area needing improvement. Good communication can improve patient outcomes, satisfaction with care and decrease patient and family anxiety. DESIGN: Scoping Review. METHODS: A scoping review was conducted following the Joanna Briggs Institution methodology: (1) identify the research question, (2) define the inclusion criteria, (3) use a search strategy to identify relevant studies using a three-step approach, (4) select studies using a team approach, (5) data extraction, (6) data analysis, and (7) presentation of results. DATA SOURCES: Medline, CINAHL, EMBASE, PsychInfo and grey literature were searched on 3 August 2022. RESULTS: The search yielded 1771 articles from the databases, of which 20 were included. An additional seven articles were included from the grey literature. Paediatric and adult interventions were found targeting staff and family of which the general recommendations were summarised into communication models. CONCLUSION: Future research should focus on evaluating the effectiveness of interventions using a standardised scale, understanding the specific needs of families, and exploring the communication models developed in this review. IMPLICATIONS FOR CLINICAL PRACTICE: Communication models for triage nurses and all emergency department nurses were developed. These may guide nurses to improve their communication which will contribute to improving family satisfaction. REPORTING METHOD: PRISMA-ScR. TRIAL AND PROTOCOL REGISTRATION: Protocol has been registered with the Open Science Framework, registration number 10.17605/OSF.IO/ETSYB. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.


Assuntos
Comunicação , Serviço Hospitalar de Emergência , Relações Profissional-Família , Humanos , Adulto , Família/psicologia , Recursos Humanos de Enfermagem Hospitalar/psicologia , Feminino , Masculino
8.
Fam Process ; 2024 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-38697926

RESUMO

A gap in research on family interventions is the understanding of long-term effects on hypothesized mechanisms of effect regarding children's processes of responding to family stressors. This study assessed the long-term effects of an intervention designed to improve interparental and family conflict resolution on adolescents' emotional insecurity about interparental conflict. Emotional insecurity about interparental conflict has long been linked with adolescents' risk for adjustment problems. These findings have motivated the development of several family-based preventive interventions, one of which is the focus of this study. A community sample of 225 adolescents and their parents participated in an RCT-based study of an intervention designed to reduce adolescent's emotional insecurity about interparental conflict. The intervention's effect on patterns of change in adolescents', mothers', and fathers' reports of the three components of adolescents' emotional insecurity (emotional reactivity, behavioral dysregulation, and cognitive representations) from posttest through the 3-year follow-up were examined using multilevel modeling. Results suggested that the intervention predicted immediate (pre to posttest) and long-term linear decreases in emotional reactivity, as well as long-term quadratic change in behavioral dysregulation. These findings support the beneficial effects of a brief intervention on multiple components of emotional security. The results also underscore the importance of considering the potential of long-term (including nonlinear) patterns of change that may occur as a function of family-based interventions, as well as that the impact of family-based interventions may vary as a function of reporter and component of emotional insecurity.

9.
Palliat Support Care ; : 1-7, 2024 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-39390958

RESUMO

BACKGROUND: Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope. OBJECTIVES: In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs). METHODS: We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups. RESULTS: Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness. SIGNIFICANCE OF RESULTS: Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

10.
J Fam Nurs ; 30(3): 232-254, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39194163

RESUMO

This review aimed to develop a framework to understand the process of information management in families with inherited conditions. Electronic databases were searched for relevant peer-reviewed articles. Articles were included if they were original research on families affected by any confirmed inherited condition, described how a family accesses, interprets, conveys, and/or uses information about the disease, included the recruitment of more than one family member, and used family as the unit of analysis. Data were analyzed through directed content analysis. Thirty-four articles from 27 studies were analyzed. We propose a framework for family information management consisting of the following domains: contextual influences, family information management behaviors, and family information management outcomes. This proposed framework expands the understanding of how families manage their genetic information in making health care decisions for their affected and at-risk relatives.


Assuntos
Família , Humanos , Família/psicologia , Gestão da Informação , Feminino , Masculino , Doenças Genéticas Inatas/psicologia , Adulto , Pessoa de Meia-Idade , Idoso
11.
Genet Med ; 25(11): 100923, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37421176

RESUMO

PURPOSE: With increasing utilization of genetic testing, sharing genetic information can become part of general family health communication while providing biological relatives with important information about their own genetic risk. Importantly, little is known about motivations for and barriers to family communication of genetic information in historically underserved populations. METHODS: Using mixed methods, we explored patient experiences with family communication in a study population of English- and Spanish-speaking adults aged 18 to 49 years, enriched for participants from historically underserved backgrounds. Risk screening for hereditary cancer guided genetic testing for cancer risk genes and other medically actionable findings. RESULTS: Most participants overall (91%), including most with normal findings (89%), shared or planned to share their results with relatives. Common motivations for sharing results were to give relatives information about their genetic risk and because the participant thought the results were interesting. Reasons for not sharing were limited contact with relatives, perceptions of limited clinical utility for relatives, and concern that discussion of genetic information was stigmatized or taboo. CONCLUSION: Results demonstrate high rates of sharing genetic information, indicate motivations for sharing go beyond facilitating genetic testing for relatives, and suggest general willingness to share genetic information as part of family health communication.


Assuntos
Testes Genéticos , Neoplasias , Adulto , Humanos , Testes Genéticos/métodos , Comunicação , Neoplasias/genética , Família , Inquéritos e Questionários , Predisposição Genética para Doença
12.
Psychooncology ; 32(7): 1048-1056, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37114337

RESUMO

BACKGROUND/OBJECTIVE: Facilitating death preparedness is important for improving cancer patients' quality of death and dying. We aimed to identify factors associated with the four death-preparedness states (no-preparedness, cognitive-only, emotional-only, and sufficient-preparedness) focusing on modifiable factors. METHODS: In this cohort study, we identified factors associated with 314 Taiwanese cancer patients' death-preparedness states from time-invariant socio-demographics and lagged time-varying modifiable variables, including disease burden, physician prognostic disclosure, patient-family communication on end-of-life (EOL) issues, and perceived social support using hierarchical generalized linear modeling. RESULTS: Patients who were male, older, without financial hardship to make ends meet, and suffered lower symptom distress were more likely to be in the emotional-only and sufficient-preparedness states than the no-death-preparedness-state. Younger age (adjusted odds ratio [95% confidence interval] = 0.95 [0.91, 0.99] per year increase in age) and greater functional dependency (1.05 [1.00, 1.11]) were associated with being in the cognitive-only state. Physician prognostic disclosure increased the likelihood of being in the cognitive-only (51.51 [14.01, 189.36]) and sufficient-preparedness (47.42 [10.93, 205.79]) states, whereas higher patient-family communication on EOL issues reduced likelihood for the emotional-only state (0.38 [0.21, 0.69]). Higher perceived social support reduced the likelihood of cognitive-only (0.94 [0.91, 0.98]) but increased the chance of emotional-only (1.09 [1.05, 1.14]) state membership. CONCLUSIONS: Death-preparedness states are associated with patients' socio-demographics, disease burden, physician prognostic disclosure, patient-family communication on EOL issues, and perceived social support. Providing accurate prognostic disclosure, adequately managing symptom distress, supporting those with higher functional dependence, promoting empathetic patient-family communication on EOL issues, and enhancing perceived social support may facilitate death preparedness.


Assuntos
Neoplasias , Assistência Terminal , Humanos , Masculino , Feminino , Doente Terminal , Estudos de Coortes , Estudos Longitudinais , Qualidade de Vida , Neoplasias/terapia , Neoplasias/diagnóstico
13.
Transpl Int ; 36: 11498, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37767527

RESUMO

The primary aim of this study was to describe regulations and practices concerning the family approach to discuss donation, specifically after the neurological determination of death, one of the most challenging steps in the donation pathway. A secondary objective was to assess the impact of legislation on consent rates for organ donation. The Council of Europe surveyed 39 member states about national regulations, practices, and consent rates; 34 replied. Opt-out legislation is present in 19, opt-in in 9 and a mixed system in six countries. An opt-out register is kept by 24 countries and an opt-in register by 18 countries, some keeping both. The mean consent rate was 81.2% of all family approaches. Most countries regulate how death using neurological criteria is confirmed (85.3%), while regulation of other aspects of the deceased donation pathway varies: the timing of informing the family about brain death (47.1%) and organ donation (58.8%), the profile of professional who discusses both topics with the family (52.9% and 64.7%, respectively) and the withdrawal of treatment after brain death (47.1%). We also noted a mismatch between what regulations state and what is done in practice in most countries. We suggest possible reasons for this disparity.


Assuntos
Transplante de Órgãos , Obtenção de Tecidos e Órgãos , Humanos , Morte Encefálica , Doadores de Tecidos , Europa (Continente)
14.
Crit Care ; 27(1): 403, 2023 10 21.
Artigo em Inglês | MEDLINE | ID: mdl-37865797

RESUMO

BACKGROUND: Shared decision-making is a joint process where patients, or their surrogates, and clinicians make health choices based on evidence and preferences. We aimed to determine the extent and predictors of shared decision-making for goals-of-care discussions for critically ill neurological patients, which is crucial for patient-goal-concordant care but currently unknown. METHODS: We analyzed 72 audio-recorded routine clinician-family meetings during which goals-of-care were discussed from seven US hospitals. These occurred for 67 patients with 72 surrogates and 29 clinicians; one hospital provided 49/72 (68%) of the recordings. Using a previously validated 10-element shared decision-making instrument, we quantified the extent of shared decision-making in each meeting. We measured clinicians' and surrogates' characteristics and prognostic estimates for the patient's hospital survival and 6-month independent function using post-meeting questionnaires. We calculated clinician-family prognostic discordance, defined as ≥ 20% absolute difference between the clinician's and surrogate's estimates. We applied mixed-effects regression to identify independent associations with greater shared decision-making. RESULTS: The median shared decision-making score was 7 (IQR 5-8). Only 6% of meetings contained all 10 shared decision-making elements. The most common elements were "discussing uncertainty"(89%) and "assessing family understanding"(86%); least frequent elements were "assessing the need for input from others"(36%) and "eliciting the context of the decision"(33%). Clinician-family prognostic discordance was present in 60% for hospital survival and 45% for 6-month independent function. Univariate analyses indicated associations between greater shared decision-making and younger clinician age, fewer years in practice, specialty (medical-surgical critical care > internal medicine > neurocritical care > other > trauma surgery), and higher clinician-family prognostic discordance for hospital survival. After adjustment, only higher clinician-family prognostic discordance for hospital survival remained independently associated with greater shared decision-making (p = 0.029). CONCLUSION: Fewer than 1 in 10 goals-of-care clinician-family meetings for critically ill neurological patients contained all shared decision-making elements. Our findings highlight gaps in shared decision-making. Interventions promoting shared decision-making for high-stakes decisions in these patients may increase patient-value congruent care; future studies should also examine whether they will affect decision quality and surrogates' health outcomes.


Assuntos
Tomada de Decisões , Objetivos , Humanos , Estado Terminal/epidemiologia , Estado Terminal/terapia , Prevalência , Unidades de Terapia Intensiva
15.
J Genet Couns ; 32(2): 486-494, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36458380

RESUMO

Cystic fibrosis (CF), a genetic disease and chronic illness, affects multiple organ systems and requires exceptional medical care and treatment. Few studies have assessed the diagnosis disclosure process to well children when their sibling(s) have CF, and none have evaluated the association between parental knowledge of CF and the disclosure of CF. The objectives of this study were to assess parental understanding of CF, demonstrate the most commonly shared topics and their frequencies of discussion with well children, and identify associations between parental understanding of CF and aspects of the disclosure process to well children. Parents were recruited from CF support organizations and asked to complete an online, anonymous survey. Individuals were eligible to participate in the study if they had at least one living child with CF and at least one living child without CF. Completed surveys from 48 individuals revealed that most parents began discussing a sibling's diagnosis of CF with the first-born well child at 5.4 years old. Topics related to CF were discussed openly and as needed with their well children (n = 44). The most frequently discussed topic, and the topic ranked most important (1.93 of 5, SD: 1.17) by 40 participants (90.9%), was medical concerns and treatment for CF. Fewer parents (n = 18, 40.9%) reported discussing the financial impact of CF, and many ranked this as least important to share (4.64 of 5, SD: 0.75). The CF knowledge assessment revealed that participants were well-informed about CF, with a mean total score of 8.9/10 (SD: 0.91). There were no associations between CF knowledge assessment scores, education level, income, and the topics discussed with well children. These results can be utilized by genetic counselors and other healthcare specialists in discussion with parents about the disclosure process of a diagnosis of CF to well children.


Assuntos
Conselheiros , Fibrose Cística , Humanos , Criança , Pré-Escolar , Fibrose Cística/diagnóstico , Fibrose Cística/genética , Revelação , Pais/educação , Inquéritos e Questionários
16.
J Genet Couns ; 32(3): 750-757, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36617666

RESUMO

Genomic testing increasingly challenges health care providers and patients to understand, share, and use information. The provision of polygenic risks is anticipated to complicate comprehension, communication, and risk perception further. This manuscript aims to illuminate the challenges confronting families with multiple genetic risks for Parkinson's disease. Identifying and planning for such issues may prove valuable to family members now and in the future, should neuroprotective or genotype-specific therapies become available. We present qualitative data from interviews with a multi-generational family carrying pathogenic variants in the glucocerebrosidase (GBA1) and leucine-rich repeat kinase 2 (LRRK2) genes which are associated with an increased risk for developing Parkinson's disease (PD). The family includes two brothers (heterozygous for LRRK2 p.G2019S and homozygous for GBA1 p.N409S) and their four descendants. The brothers were concordant for GD and discordant for PD. Genetic counseling and testing were provided to four of the six participants. Two years later, semi-structured interviews were conducted with the initial participants (n = 4) and two additional first-degree relatives. Interviews were transcribed and thematically analyzed, providing the basis for this report. Illuminated topics include the perceived risk of developing PD, recall of genetic information, and family communication. With the expanding use of exome and genome sequencing, we anticipate that genetic counselors will increasingly face the challenges demonstrated by this case involving multiple genetic risks for PD, limited data to clarify risk, and the inherent variability of family communication, genetic knowledge, and risk perception. This clinical case report provides a compelling narrative demonstrating the need for additional research exploring these multifaceted topics relevant to both families facing these challenges and providers striving to assist, support and guide their journey.


Assuntos
Doença de Parkinson , Proteínas Serina-Treonina Quinases , Masculino , Humanos , Proteínas Serina-Treonina Quinases/genética , Serina-Treonina Proteína Quinase-2 com Repetições Ricas em Leucina/genética , Doença de Parkinson/genética , Mutação , Comunicação
17.
J Genet Couns ; 32(1): 79-89, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35941805

RESUMO

Identification of a hereditary prostate cancer in an affected individual can guide treatment and may also impact cancer screening and surveillance for patients and their relatives. This study aimed to determine the factors that are associated with the decision-making process of individuals with prostate cancer regarding whether to pursue genetic testing as well as how, why, and with whom genetic test results are shared. We surveyed 113 patients diagnosed with prostate cancer who received cancer genetic counseling through a United States tertiary medical center, inquiring about genetic testing motivations and family communication about results. Among those who pursued genetic testing, (1) learning about my family's possible cancer risk (98%), (2) learning information that may guide cancer treatment (93%), and (3) learning if I am at risk for future cancers (92%) were most frequently identified as slightly or very important factors in their decision. Participants shared their genetic test results in a higher proportion to male first-degree relatives than female first-degree relatives; however, no significant difference was found (p = 0.103). Our study may suggest sex differences related to family communication about genetic testing results. Such findings indicate a critical need for genetic counselors to clearly communicate the impact of genetic test results on both male and female relatives. Further research on motivation and family communication about genetic test results in diverse cohorts is needed.


Assuntos
Motivação , Neoplasias da Próstata , Humanos , Masculino , Família/psicologia , Testes Genéticos/métodos , Comunicação , Aconselhamento Genético , Predisposição Genética para Doença
18.
J Res Adolesc ; 33(2): 418-430, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36404680

RESUMO

Using network analysis, this study investigated how family communication patterns (Conversation and Conformity) were related to and predictive of adolescent overall depression severity and specific symptoms. A community sample of adolescents (10-17 years, n = 1327) completed the Children's Depression Inventory and the Revised Family Communication Pattern Instrument. Depressive symptoms were also re-assessed 6 months later. Results showed that Conversation orientation protected against, whereas Conformity orientation increased the risk of adolescent depression. Family communication particularly influenced the child's feeling of being unloved, and feeling unloved was the only symptom prospectively predicted by two communication orientations at baseline. These findings revealed the path linking family factors to adolescent depression and may have implications for future family-based interventions.


Assuntos
Comunicação , Depressão , Criança , Humanos , Adolescente , Depressão/diagnóstico
19.
J Fam Issues ; 44(1): 203-219, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36605181

RESUMO

This study aims to examine the association between family communication and psychological distress with coping as a potential mediator. The study also developed and validated the Family Communication Scale (FCS) in the context of COVID-19 pandemic. Participants (n = 658; 74.9% female) were general public ranged in age between 18 and 58 years (mean age = 26.38, SD = 10.01). The results showed that family communication directly influenced psychological distress and indirectly influenced through approach coping. However, avoidant coping was not directly associated with psychological distress, nor did it mediate the association between family communication and psychological distress. The findings suggest that people, who have better family communication, highly engage in approach coping which in turn leads to better psychological health in face of adversity. The findings have important empirical and theoretical implications.

20.
Curr Psychol ; 42(16): 13207-13219, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37583981

RESUMO

Military deployment and reintegration challenges permeate the lives and relationships of Veterans, their spouses, and their families. Among these challenges, 23% of post-9/11 Veterans have been diagnosed with posttraumatic stress disorder (PTSD). Psychiatric service dogs have been found to help clinically alleviate PTSD symptoms when used as a complementary intervention. However, minimal research exists that explores the role of the service dog as a mechanism for cultivating resilience within the military family system. Researchers utilized a qualitative, constant comparative approach to analyze self-reported experiences of 101 individuals, including Veterans (n = 67) and their spouses (n = 34). Analyzed through the framework of the Theory of Resilience and Relational Load (Afifi et al., 2016), findings suggest complex communication processes that facilitate relational and family adaptation. These processes encompassed (a) the role of the service dog in building emotional reserves, (b) relational load introduced when caring for the service dog, and (c) the service dog's facilitation of relational maintenance behaviors among family members that contributed to communal orientation. Based on the results of this qualitative analysis, researchers suggest educational interventions where service dog trainers and mental health practitioners can incorporate relational maintenance strategies and family-focused approaches to integrating service dogs as military family members.

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