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1.
Tumori ; : 3008916241245005, 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38591573

RESUMO

This article describes the oncology programs developed in Italy for adolescents and young adults with cancer, with a specific focus on the local projects created in pediatric oncology centers. A common feature of such projects is the emphasis on creative and artistic activities and laboratories (involving music, photography, novel writing, fashion design, and so on) designed to give young patients innovative means of expression.This article highlights the amazing powers of adolescents involved in these projects: the power to produce beautiful things in a place that is not normally associated with the idea of beauty; the power to make their doctors smile and grasp the profound sense of life; the power to make hospitals become places for producing culture.

2.
BMC Nurs ; 23(1): 230, 2024 Apr 07.
Artigo em Inglês | MEDLINE | ID: mdl-38584253

RESUMO

BACKGROUND: Virtual simulation-based education for healthcare professionals has emerged as a strategy for dealing with infectious disease disasters, particularly when training at clinical sites is restricted due to the risk of infection and a lack of personal protective equipment. This research evaluated a virtual simulation-based education program intended to increase nurses' perceived competence in providing psychological support to patients affected by infectious disease disasters. METHODS: The efficacy of the program was evaluated via a randomized controlled trial. We recruited 104 nurses for participation in the study and allocated them randomly and evenly to an experimental group and a control group. The experimental group was given a web address through which they could access the program, whereas the control group was provided with a web address that directed them to text-based education materials. Data were then collected through an online survey of competence in addressing disaster mental health, after which the data were analyzed using the Statistical Package for the Social Sciences(version 23.0). RESULTS: The analysis showed that the experimental group's disaster mental health competence (F = 5.149, p =.026), problem solving process (t = 3.024, p =.003), self-leadership (t = 2.063, p =.042), learning self-efficacy (t = 3.450, p =.001), and transfer motivation (t = 2.095, p =.039) significantly statistically differed from those of the control group. CONCLUSIONS: A virtual nursing simulation-based education program for psychological support can overcome limitations of time and space. The program would also be an effective learning resource during infectious disease outbreaks. CLINICAL TRIAL REGISTRATION: This Korean clinical trial was retrospectively registered (21/11/2023) in the Clinical Research Information Service ( https://cris.nih.go.kr ) with trial registration number KCT0008965.

3.
Urologie ; 2024 Apr 04.
Artigo em Alemão | MEDLINE | ID: mdl-38573501

RESUMO

BACKGROUND: Human beings with a difference in sexual development (DSD) often underwent gender reassignment surgery during early childhood. However, the medical decision was often not congruent with the gender identity that affected persons developed later on. OBJECTIVES: To represent the interests of affected persons, an interdisciplinary guideline in cooperation with support groups was written. MATERIALS AND METHODS: The revision of the first version of the guideline, published in 2016, was edited by 18 professional societies and working groups as well as 3 support groups. A literature search was performed for each of the 12 chapters. Recommendations and statements created by the working groups were voted on during four consensus conferences. RESULTS: The guideline highlights the right of self-determination of affected persons. In this context, new legal requirements are reported. Other than necessary primary diagnostics, medical procedures should be postponed. Most important is the psychological support of parents and patients. Tumor risk of the gonads and protection of fertility are analyzed and discussed in detail. CONCLUSION: The content of the guideline represents a paradigm shift in dealing with human beings with a difference of sexual development. Projects as DSD Care and Empower-DSD help to promote the practical implementation of the guideline's recommendations.

4.
Acta Psychol (Amst) ; 246: 104276, 2024 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-38640577

RESUMO

BACKGROUND: Oncological treatments lead to physical and emotional difficulties with notable consequences in everyday life. Thus, integrated interventions that can promote quality of life are needed. Since current studies suggest that integrated programs of both physical exercises and psychological sessions can promote positive emotions, this pilot study aims to explore the impact of a one-week intervention that combines sailing activities and psychological support. METHODS: Twenty-nine breast cancer survivors took part in this study. Before and after the intervention, participants were invited to answer three open questions to evaluate their perceptions of personal evaluations about their relationships and emotions. A Qualitative Thematic Analysis was used to evaluate participants' answers and to compare the sub-themes that emerged in the two times. RESULTS: Findings highlighted three main themes: a) caregivers and emotional closeness - family members are generally a crucial point of reference for participants. Friends, colleagues, and healthcare professionals were also cited as relevant figures during the cancer journey and after the psychological intervention; b) emotions towards others - positive and negative emotions towards these figures emerged, and some women felt alone, and c) emotions towards oneself - exploring emotions related to themselves highlighted positive and negative feelings and the desire for change to promote love and care towards themselves. Interestingly, the number of negative emotions towards themselves decreased after the intervention. CONCLUSIONS: The integrated intervention could promote the reflection on personal relationships and emotions.

5.
Front Glob Womens Health ; 5: 1266162, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38638326

RESUMO

Working mothers must often balance work and family responsibilities which can be affected by rigid and irrational beliefs about motherhood. The present study had two aims: (a) to provide psychometric evidence for a shortened Italian version of the Rigid Maternal Beliefs Scale (RMBS) and (b) to facilitate mothers' return to work after maternity leave by reducing perceptions of anxiety and stress related to rigid maternal beliefs (i.e., perceptions and societal expectations of mothers, maternal confidence, maternal dichotomy) and by teaching specific recovery strategies (e.g., relaxation, mastery experiences) to manage anxiety and stress through an online psychological intervention. Results replicated the three-factor structure of the original RMBS and showed good psychometric properties. The online psychological intervention resulted in decrease in the rigidity of maternal beliefs, perceived anxiety and stress, and increase in recovery strategies. These initial results are promising and encourage further investigation into online psychological interventions for improving the well-being of working mothers.

6.
Dementia (London) ; : 14713012241233765, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38626888

RESUMO

Introduction There is limited psychological support available to help people living with dementia to deal with the emotional consequences of their condition. Anxiety and depression are commonly experienced in this population, yet the use of counselling and psychotherapeutic interventions is not well documented. Aim This systematic review sought to understand the current knowledge on the role and impact of therapeutic counselling on the emotional experience of adults living with dementia. Methods Qualitative and quantitative research designs were accepted for review. A comprehensive search of the main biomedical, nursing and other specialist databases was performed to access articles published between 2015 and 2022. Trial registers and academic journals were also searched. 43 original studies were included: qualitative (n = 15); RCTs (n = 9); other designs (n = 19); plus eight systematic reviews. Results The majority of studies were conducted in Europe, the United Kingdom in particular, although a range of countries from across the globe were represented. The combined evidence from the different study designs suggest a range of ways that people living with different stages of dementia can participate in, and gain emotional benefit from, therapeutic counselling. Key themes identified: (1) The emotional and well-being benefits of therapeutic counselling; (2) No one size fits all - relational and tailored approaches driven by person-centred values; (3) Training, supervision and building community for counsellors; (4) Involvement of people with dementia in therapeutic interventions. Conclusions Our findings from this systematic review show that different therapeutic approaches have been tested with people at different stages of a dementia diagnosis. The results suggest the value of therapeutic counselling as a supportive medium to help with the processing and coping of difficult emotions and feelings across the trajectory of a dementia illness.

7.
J Adv Nurs ; 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38504145

RESUMO

AIM: To understand the perceived helpfulness and acceptability of a bespoke psychological therapy service for registered nurses. The service provided a free and confidential specialist mental health service to all healthcare professionals, including nurses and nursing students. DESIGN: An exploratory study using a descriptive qualitative approach. METHODS: A purposive sample of 20 registered nurses accessing a bespoke psychological therapy service in Wales participated in audio-recorded semi-structured interviews in January 2022. Transcribed data were analysed using reflexive thematic analysis. RESULTS: Four interrelated themes were identified from the data analysis: COVID [SARS-CoV-2] changed things; You're a nurse, you're human; I've got 'me' back; and pretty close to miracle workers. CONCLUSION: Participants attempted to live up to an idealized image of a nurse, generating self-stigmatizing beliefs that negatively affected their mental health. The psychological therapy service enabled participants to put their roles into perspective, that is, separate themselves from their role, be vulnerable, and develop confidence and adaptive coping strategies. Participants valued the minimal barriers and ease of access to support. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The complex relationship between nurse identity and the challenges of the workplace needs to be central to nurse education. Nurses can benefit from rapid access to a timely, confidential, and independent self-referring psychological therapy service. IMPACT: This qualitative study explored the helpfulness and accessibility of psychological support for nurses. The main themes were that COVID changed things; You're a nurse, you're human; I've got 'me' back; and pretty close to miracle workers. The findings will impact how nurses are supported in the United Kingdom and worldwide. REPORTING METHOD: This report adheres to the standards for reporting qualitative research (SRQR). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

8.
Psychooncology ; 33(3): e6328, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38504431

RESUMO

OBJECTIVE: Nuanced distress screening tools can help cancer care services manage specific cancer groups' concerns more efficiently. This study examines the sensitivity and specificity of a tool specifically for women with gynaecological cancers (called the Gynaecological Cancer Distress Screen or DT-Gyn). METHODS: This paper presents cross-sectional data from individuals recently treated for gynaecological cancer recruited through Australian cancer care services, partner organisations, and support/advocacy services. Receiver operating characteristics analyses were used to evaluate the diagnostic accuracy of the DT-Gyn against criterion measures for anxiety (GAD-7), depression (patient health questionnaire), and distress (IES-R and K10). RESULTS: Overall, 373 individuals aged 19-91 provided complete data for the study. Using the recognised distress thermometer (DT) cut-off of 4, 47% of participants were classified as distressed, while a cut-off of 5 suggested that 40% had clinically relevant distress. The DT-Gyn showed good discriminant ability across all measures (IES-R: area under the curve (AUC) = 0.86, 95% CI = 0.82-0.90; GAD-7: AUC = 0.89, 95% CI = 0.85-0.93; K10: AUC = 0.88, 95% CI = 0.85-0.92; PHQ-9: AUC = 0.85, 95% CI = 0.81-0.89) and the Youden Index suggested an optimum DT cut-point of 5. CONCLUSIONS: This study established the psychometric properties of the DT-Gyn, a tool designed to identify and manage the common sources of distress in women with gynaecological cancers. We suggest a DT cut point ≥5 is optimal in detecting 'clinically relevant' distress, anxiety, and depression in this population.


Assuntos
Neoplasias dos Genitais Femininos , Neoplasias , Humanos , Feminino , Estudos Transversais , Depressão/diagnóstico , Depressão/epidemiologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Austrália , Sensibilidade e Especificidade , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Neoplasias/epidemiologia , Psicometria , Neoplasias dos Genitais Femininos/diagnóstico , Inquéritos e Questionários , Programas de Rastreamento
9.
J Psychosom Res ; 179: 111636, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38507969

RESUMO

OBJECTIVE: Congenital conditions with atypical development of chromosomal, gonadal, or anatomic sex characteristics are referred to as Differences of Sex Development (DSD). Psychosocial care is recommended to be an integral part of clinical management for individuals with DSD. Few studies have examined the perceived need for, utilization of and the opinions of individuals with DSD regarding psychological support. METHODS: This cross-sectional study was part of a European multicentre study in 14 different medical centres in six countries. In total, 1040 individuals with DSD participated in a patient-reported outcome questionnaire asking about experiences and opinions regarding psychological support in DSD care. RESULTS: A majority of the participants reported that they had not received psychological support, in childhood and/or adolescence (70.6%, n = 692) nor in adulthood (67.9%, n = 661). Need for psychological support in childhood and/or adolescence was reported by 51.3% (n = 503), need for psychological support in adulthood, was reported by 49.5% (n = 482). The majority (80.2%; n = 718) agreed with the statement that people with DSD should always be offered psychological support. According to 78.7% (n = 697) of the participants, parents of children with DSD should always be offered psychological support. CONCLUSION: Our findings support the existing consensus that psychological support should be an integral part of DSD care. The discrepancy between received and perceived need for psychological support suggests that individuals with DSD experience barriers to access mental health care services. Psychosocial and psychological services for children, adolescents and adults should therefore be available and offered throughout the lifespan to individuals with DSD.


Assuntos
Transtornos do Desenvolvimento Sexual , Serviços de Saúde Mental , Adulto , Criança , Adolescente , Humanos , Estudos Transversais , Transtornos do Desenvolvimento Sexual/terapia , Transtornos do Desenvolvimento Sexual/psicologia , Desenvolvimento Sexual , Aconselhamento
10.
Artigo em Inglês | MEDLINE | ID: mdl-38541356

RESUMO

Grief after suicide or patient-perpetrated homicide can be complex for those involved in the patient's care. Mental health practitioners with patients who die unexpectedly may be called to assist in the formal investigation processes that follow. The aim of this study was to examine the experience of mental health practitioners called to attend a coroner's inquest or other forms of formal inquiry. A protocol for a systematic review was prospectively registered on PROSPERO (CRD42023400310). A thematic synthesis of existing literature was conducted. We identified six articles for inclusion and constructed three themes from our analysis: Blame and enduring hostility, In the dark, and Limited learning. We found mental health practitioners may construct narratives of self-blame. These can be reinforced by the investigatory processes that follow. Feedback from inquiries is often delivered haphazardly and may not reflect the realities of clinical work. The support given to assist practitioners through inquiry processes varied-both in amount and how helpful it was. The research conducted on this topic is limited. More qualitative research should be conducted to understand the factors that make this experience more or less difficult as well as well as what support is needed for whom.


Assuntos
Luto , Humanos , Médicos Legistas , Pesar , Saúde Mental
11.
Toxicol Res (Camb) ; 13(2): tfae045, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38545435

RESUMO

In this study COVID-19 effects on different aspects of life that how this virus created a mess in every discipline of life starting from a small tuck shop of a street to a huge business with a chain between different countries; and some preventive measures are also suggested. Not only mental healthiness as well as physical health of people was also disturbed to a large extent. People being quarantined did not do any practice and had nothing to do, their boredom made them mentally and physically inactive. For minimization the effect of this pandemic on mental healthiness, interventions were practiced and psychological support systems were developed to help mentally effected people; on the other hand, to improve physical health the hospital workers worked day and night in return they got affected too either mentally or physically. Many of the youngsters started alcohol consumption during quarantine. Because of the closure of educational institutes, the students were sent back to their homes where there was no proper guidance for them and they lost their interests in studies; and in a sense educational impact of COVID-19 was also unbearable. Agricultural system was affected badly and the whole world passed through a huge economic loss. The flights and traffic were blocked throughout the world, and it is the only positive impact that COVID-19 led to the environment by improving water and air quality as there was a remarkable reduction in the emission of greenhouse gases.

12.
J Reprod Infant Psychol ; : 1-18, 2024 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-38361489

RESUMO

BACKGROUND: Preterm prelabour rupture of membranes (PPROM) is a common obstetric condition but outcomes can vary depending on gestation. Significant maternal and foetal complications occur including preterm birth, infection, abruption, cord prolapse, pulmonary hypoplasia and even death. Although the need for psychological support is recognised it is unclear how much is actually offered to women and their families. This study aimed to survey the views of women and their families who have undergone PPROM in order to understand the care and psychological burden these families face. METHODS: An online survey was conducted, recruiting women via social media with collaboration from the patient advocacy support group Little Heartbeats. Responses were collated where fields were binary or mean and standard deviations calculated. Framework analysis was used to identify and analyse themes in free text responses. RESULTS: 180PPROM pregnancies were described from 177 respondents. Although carewas variable and respondents were from across the world there werecommon themes. Five themes were highlighted which were: a lack ofbalanced information regarding the condition, support in decisionmaking and support with the process, specific psychological supportand ongoing psychological consequences of PPROM. CONCLUSION: This survey highlights areas in which care needs to be improved for women with PPROM. Previous studies have shown that providing good care during the antenatal period reduces long-term psychological morbidity for the whole family. The need for support, with regard both to information provided to women and their families and their psychological support needs to be addressed urgently.

13.
Int J Soc Psychiatry ; : 207640231223423, 2024 Feb 11.
Artigo em Inglês | MEDLINE | ID: mdl-38343195

RESUMO

BACKGROUND: Returning to work (RTW) has always been regarded as one of the important indicators to evaluate the therapeutic effect of patients with schizophrenia. The existing studies on RTW in patients with schizophrenia are mostly focused on intervention measures, and the qualitative research on RTW is very limited. The purpose of this study was to evaluate the experience of the RTW after treatment in patients with schizophrenia. METHOD: A longitudinal qualitative study was conducted involving 24 patients with schizophrenia in China. The interviews were held at three time-points during their RTW process, (1) when patients had improved and were close to discharge, (2) within 1 month post-discharge, and (3) 6 months post-discharge. The interview recordings were transcribed by the research team, and transcripts were independently analyzed by two independent coders using reflexive thematic analysis. RESULTS: A total of 24 patients with schizophrenia participated in 72 personal interviews. The thematic framework based on the experience of patients with schizophrenia reveals a three-phases of the process of RTW: improved, being at a loss, and job crisis. The study identified one theme of the first phase: the expectation and optimism. Two themes in the second phase: (1) psychological distress of upcoming work; (2) expectation of assistance pre-work. And four themes in the third phase: (1) tremendous pressure of RTW; (2) lack of medical and social support; (3) social status and interpersonal relationships change; and (4) high level of financial pressure. CONCLUSION: The experience of RTW is a dynamic process with great challenges in each phase, patients with schizophrenia have been deeply affected by what they have experienced. There is an urgent need to ensure that existing community and social support is integrated into daily care to support patients with schizophrenia to RTW successful. The findings of this study also suggest relevant departments and employers should be aware of the barriers to RTW for patients with schizophrenia, and take certain measures to change the current situation.

14.
Chin Clin Oncol ; 13(1): 9, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38372059

RESUMO

BACKGROUND AND OBJECTIVE: Liver resection (LR) is a commonly performed surgical procedure for the management of hepatocellular carcinoma and other liver conditions. Despite its benefits in providing patients a potential cure, it is also associated with significant postoperative complications and prolonged recovery periods. In recent years, pre-operative rehabilitation (prehabilitation) has emerged as an up-and-coming strategy to optimize patients' physical, psychological and functional status before LR, leading to improved surgical and patient postoperative outcomes. Hence, our review aims to explore and synthesize the existing literature on prehabilitation in LR to provide an overview of the current evidence to help guide physicians in managing their patients. METHODS: A comprehensive literature search was conducted in multiple electronic databases from inception to July 2023. The search strategy was tailored to capture studies investigating the role of prehabilitation in LR, and the factors that contribute to beneficial outcomes in the postoperative period. KEY CONTENT AND FINDINGS: Prehabilitation programs encompass a multifaceted approach to enhance surgical outcomes and patient well-being. This considers the specific needs of the varying patient populations, such as the elderly, or the cancer ridden. Improving physical fitness, nutritional supplementation and psychological support are the common tenets of prehabilitation. In physical prehabilitation, patients are engaged in intensive physical exercise often by means of a cycle ergometer. Addressing nutritional deficiencies through supplements and dietary interventions is also vital. Psychosocial assessments, advance care planning, music therapy, and progressive relaxation exercises are shown to enhance patient resilience and well-being. In addition, innovative approaches such as optimizing fluid balance, avoiding epidural analgesia, perioperative steroid administration, phosphate correction and branched-chain amino acid supplementation are being explored. CONCLUSIONS: Prehabilitation is important in optimizing patients before LR and is key in improving postoperative outcomes. Several prehabilitation strategies exist, but no formal consensus exists on patient selection and an ideal program.


Assuntos
Cuidados Pré-Operatórios , Exercício Pré-Operatório , Humanos , Idoso , Cuidados Pré-Operatórios/métodos , Complicações Pós-Operatórias/prevenção & controle , Complicações Pós-Operatórias/reabilitação , Hepatectomia , Fígado
15.
Eur J Oncol Nurs ; 68: 102508, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38219474

RESUMO

PURPOSE: There is little information on the supportive care offered to breast cancer patients. We investigated the association between the marginalization index and selected services offered by health professionals. METHODS: We used data from a cross-sectional parent study performed in Mexico from 2007 to 2009. We analyzed data from 832 women between 35 and 69 years of age with a histopathological diagnosis of breast cancer. This study was performed in hospitals in 5 states. We used frequencies, measures of central tendency, and logistic regression. We used the svy package of STATA statistical software v17. RESULTS: Overall, 15.6% of the study population reported that health professionals offered them selected services. The offer of two or more selected services was greater among women living in states with a very high marginalization index (21.8%) than among those living in states with a very low marginalization index (13.8%). Among women living in states with high marginalization, the odds of receiving a selected service offer were 2.03 times higher than those living in states with low marginalization (Odds ratio (OR) = 2.03, 95% CI 1.08-3.83). For women in the highest tertile of the asset index, the odds of receiving a selected service offer were 2.7 times greater than the odds for women in the lowest tertile (OR = 2.66, 95% CI 1.03-6.88). CONCLUSION: The prevalence of comprehensive care offered to breast cancer patients is low in Mexico and varies according to the marginalization index and the asset index.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Estudos Transversais , México/epidemiologia , Pessoal de Saúde , Fatores Socioeconômicos
16.
J Cardiovasc Dev Dis ; 11(1)2024 Jan 20.
Artigo em Inglês | MEDLINE | ID: mdl-38276657

RESUMO

The prenatal diagnosis of congenital heart disease (CHD) represents, for both parents, a particularly stressful and traumatic life event from a psychological point of view. The present review sought to summarize the findings of the most relevant literature on the psychological impact of prenatal diagnosis of CHD on parents, describing the most common mechanisms employed in order to face this unexpected finding. We also highlight the importance of counseling and the current gaps in the effects of psychological support on this population.

17.
Nurs Open ; 11(1): e2086, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38268291

RESUMO

AIM: We explored midwives' experiences and challenges in providing maternity care during the period of the first surge of the COVID-19 pandemic in Dodoma. DESIGN: Phenomenological study design was used to explore midwives' experiences and challenges in providing maternity care during the COVID-19 pandemic in Tanzania. METHODS: We conducted interviews with a total of 23 midwives, using semi-structured interviews and an audio recorder. Five focus group discussions (FGDs) were conducted. To analyse the data, we used interpretive phenomenological thematic data analysis with NVivo software. To analyse templates, we followed a step-by-step process, starting with familiarizing ourselves with the data, followed by preliminary coding, organizing themes, developing an initial coding template, using the initial template, refining the template and finally applying it to the entire dataset. RESULTS: It was found that three themes and eight subthemes merged in the current study. The main themes were ① mental health distress, ② work environment challenges and ③ isolation of midwives by different groups. PUBLIC CONTRIBUTION: Reducing risk and protecting midwives from infectious diseases will improve the workforce, reduce the number of hospital stays, reduce the cost of hospital services, improve birth outcomes and indirectly improve family, community and national economies. CONCLUSION: Due to the system's failure to provide psychological support, protective environment and isolation rooms for confirmed or suspected cases put midwives at a higher risk of contracting the virus and had to work in a stressful environment. In addition to having the right tools, midwives must also receive emotional and psychological support in order to be at their best. The system must ensure that midwives are ready for uncertain times, such as pandemic infectious disease outbreaks, by providing protective work place environment such as personal protective equipment, psychological support and isolation room for confirmed COVID-19 cases.


Assuntos
COVID-19 , Serviços de Saúde Materna , Tocologia , Feminino , Gravidez , Humanos , Pandemias , Tanzânia
18.
Orphanet J Rare Dis ; 19(1): 27, 2024 Jan 27.
Artigo em Inglês | MEDLINE | ID: mdl-38281056

RESUMO

BACKGROUND: Approximately 50% of rare diseases have symptom onset during childhood. A high level of nursing care and an often uncertain prognosis put caregivers of the affected children at high risk for psychological distress. At the same time, their caregivers have limited access to appropriate psychological care. The aim of this study was to evaluate a web-based psychological support program for caregivers of children with chronic rare diseases (WEP-CARE). METHODS: German-speaking parents (recruited between May 2016 and March 2018) caring for children aged 0-25 years with a rare disease showing clinically relevant anxiety symptoms, were assigned to either the WEP-CARE (n = 38) or treatment as usual (n = 36) condition within a randomized controlled trial. The primary outcome measure was parental anxiety, assessed with the Generalized Anxiety Disorder Questionnaire (GAD-7). Secondary outcomes were fear of disease progression, depression, coping, quality of life and user satisfaction. The group differences were tested through repeated-measures analyses of variance. The WEP-CARE group was additionally followed up three months after the treatment. RESULTS: A significant time-group interaction was found for anxiety (F (1,35) = 6.13, p = .016), fear of disease progression (F (1,331) = 18.23, p < .001), depression (F (1,74) = 10.79, p = .002) and coping (F (1,233) = 7.02, p = .010), suggesting superiority of the WEP-CARE group. Sustainability of the treatment gains regarding anxiety, fear of disease progression and coping was confirmed at the 6-month follow-up assessment (p < .01). A significant interaction effect could not be found for quality of life (F(1,2) = 0.016; p = .899). Both participating parents and therapists were satisfied with WEP-CARE. CONCLUSIONS: Our results underline the efficacy and feasibility of WEP-CARE for parents of children with various rare diseases.


Assuntos
Cuidadores , Terapia Cognitivo-Comportamental , Criança , Humanos , Cuidadores/psicologia , Doenças Raras , Depressão , Qualidade de Vida , Terapia Cognitivo-Comportamental/métodos , Doença Crônica , Progressão da Doença , Internet
19.
Eur J Pediatr ; 183(2): 965-969, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37975942

RESUMO

Receiving information in the case of a positive or false-positive expanded newborn screening (ENBS) result for metabolic diseases is a stressful event. The availability of psychological support to families is crucial across the different communication steps and is recommended by different guidelines and position papers. However, more information is needed about the availability of psychological resources in the ENBS process. This national survey aimed to provide an overview of the availability of psychological resources for parents who received communication of positivity at the ENBS in the 23 Italian centers and how the support is provided to parents. An online survey was sent to the Heads of the ENBS centers asking about the availability of a clinical psychologist, their involvement in the ENBS process, and an estimation of parents receiving psychological support. More than 60% of the centers report having a clinical psychologist in the ENBS team; however, in more than 50% of cases, the psychologist does not participate in the consultation with parents (nor for the first consultation post-positivity or at confirmation of diagnosis). Furthermore, nearly 60% of the centers reported the experience of parental rejection of psychological sessions.  Conclusion: There is a need for harmonization among the Italian ENBS centers concerning the availability of psychological resources and how these resources are provided to families. Parents' needs remained only partially fulfilled. What is Known: • Receiving communication of positivity at the ENBS can be highly stressful for parents and requires adequate psychological support. • The guidelines recommend psychological support for parents during the ENBS process. What is New: • Only 14/23 (60.9%) of Italian ENBS centers have a clinical psychologist within the team. • In half of the consultations with parents receiving communication of positivity, the clinical psychologist is never involved.


Assuntos
Doenças Metabólicas , Triagem Neonatal , Recém-Nascido , Humanos , Triagem Neonatal/psicologia , Doenças Metabólicas/diagnóstico , Pais/psicologia , Comunicação , Itália
20.
Int J Gynaecol Obstet ; 164(2): 499-503, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37431204

RESUMO

There is significant variation in practice when managing couples with recurrent miscarriage (RM), with guidelines differing on the definition of RM, recommended investigations, and treatment options. In the absence of evidence-based guidance, and following on from a paper by the authors-FIGO Good Practice Recommendations on the use of progesterone in the management of recurrent first-trimester miscarriage-this narrative review aims to propose a global holistic approach. We present graded recommendations based on best available evidence.


Assuntos
Aborto Habitual , Humanos , Feminino , Aborto Habitual/prevenção & controle
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