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1.
BMC Med ; 22(1): 40, 2024 01 29.
Artigo em Inglês | MEDLINE | ID: mdl-38281904

RESUMO

BACKGROUND: To date, almost no research on the psychosocial implications of albinism has been conducted in France and an exploration of albinism-related experiences could be beneficial, in order to better understand this condition. The aim of this study was to examine how French people with albinism and their parents live with and adapt to this condition in all the areas of their lives. METHODS: Semi-structured phone interviews were conducted with 9 parent-child dyads, each participating separately. Participants were recruited by convenience sampling, thanks to the combined efforts of a patient association (Genespoir) and professionals from the partner medical referral centers involved in the project. Dyads in which the individual with albinism had any comorbidity were excluded. The interviews were then transcribed and subjected to in-depth thematic analysis. Two codebooks were constructed in a mirrored process: one for people with albinism; the other for their parents. They were finally merged at the end of the coding step. RESULTS: Four main categories were identified: personal perceptions and social representations of albinism, difficulties and obstacles encountered by people with albinism, resources and facilitators, and the importance of parent-child functioning. The results indicated that experiences of stigmatization during childhood and adolescence are common and that people with albinism face challenges in adapting to certain obstacles related to their visual impairments (VI) (e.g., inability to drive a car; eye strain...). Parents emerged as one, if not as the main, source of support for people with albinism throughout their development. Although external support systems exist to assist them in various aspects of their lives, some of them primarily rely on their own personal resources to cope. CONCLUSIONS: This research highlights the importance of a systemic and transdisciplinary approach to make sure families receive the support that best meets their needs.


Assuntos
Albinismo , População Europeia , Apoio Familiar , Pais , Adolescente , Adulto , Humanos , Albinismo/epidemiologia , Albinismo/psicologia , População Europeia/psicologia , França , Pais/psicologia , Pesquisa Qualitativa , Estigma Social , Apoio Social
2.
Ann Behav Med ; 56(4): 368-380, 2022 04 02.
Artigo em Inglês | MEDLINE | ID: mdl-34871341

RESUMO

BACKGROUND: Patterns of protective health behaviors, such as handwashing and sanitizing during the COVID-19 pandemic, may be predicted by macro-level variables, such as regulations specified by public health policies. Health behavior patterns may also be predicted by micro-level variables, such as self-regulatory cognitions specified by health behavior models, including the Health Action Process Approach (HAPA). PURPOSE: This study explored whether strictness of containment and health policies was related to handwashing adherence and whether such associations were mediated by HAPA-specified self-regulatory cognitions. METHODS: The study (NCT04367337) was conducted among 1,256 adults from Australia, Canada, China, France, Gambia, Germany, Israel, Italy, Malaysia, Poland, Portugal, Romania, Singapore, and Switzerland. Self-report data on cross-situational handwashing adherence were collected using an online survey at two time points, 4 weeks apart. Values of the index of strictness of containment and health policies, obtained from the Oxford COVID-19 Government Response Tracker database, were retrieved twice for each country (1 week prior to individual data collection). RESULTS: Across countries and time, levels of handwashing adherence and strictness of policies were high. Path analysis indicated that stricter containment and health policies were indirectly related to lower handwashing adherence via lower self-efficacy and self-monitoring. Less strict policies were indirectly related to higher handwashing adherence via higher self-efficacy and self-monitoring. CONCLUSIONS: When policies are less strict, exposure to the SARS-CoV-2 virus might be higher, triggering more self-regulation and, consequently, more handwashing adherence. Very strict policies may need to be accompanied by enhanced information dissemination or psychosocial interventions to ensure appropriate levels of self-regulation.


Assuntos
COVID-19 , Adulto , COVID-19/prevenção & controle , Desinfecção das Mãos , Humanos , Pandemias/prevenção & controle , Políticas , SARS-CoV-2
3.
BMC Palliat Care ; 21(1): 212, 2022 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-36451118

RESUMO

BACKGROUND: Cancer is one of the leading causes of death worldwide and a cancer death is a major risk factor for pathological bereavement. This systematic review of the literature aimed to identify biopsychosocial and existential determinants specific to the palliative phase of cancer that influence the grieving experience of the caregiving relative. METHOD: A systematic review of the literature was conducted without language or time restrictions. The Cairn, Cochrane Library, PubMed, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection databases were explored. All studies assessing pre- and post-death measures and focusing on friends and relatives caring for adults with cancer in palliative care services were included in the review. RESULTS: Out of 645 articles identified, 18 full text studies were finally included in our systematic review of the literature. Many factors specific to the cancer palliative phase were identified as influencing the bereavement experience of caregivers, with factors relating to: 1) the caregiver (e.g. social support, psychological burden, preparation for loss, action and discussion related to death); 2) the patient (e.g. denial or acceptance); 3) the interactions between patient and their caregivers (e.g. tensions, communication difficulties, and presence at the time of death); and 4) the end-of-life context. The caregiver's grief experience can be described by the following terms: typical and pathological grief, anxiety, depression, guilt, psychological distress, post-traumatic stress disorder and post-traumatic growth, and life satisfaction. CONCLUSIONS:  Many contextual, sociodemographic, dispositional and transactional factors specific to the palliative cancer phase are involved in the caregiver's grieving experience. Avenues for reflection and recommendations are proposed including supporting communication and patient-relative relationships, evaluating the nature and degree of functionality of coping strategies, strengthening the robustness of methodologies, considering impact of COVID-19, and new lines of enquiry for research.


Assuntos
Luto , COVID-19 , Neoplasias , Adulto , Humanos , Cuidados Paliativos , Pesar , Neoplasias/terapia
4.
Health Qual Life Outcomes ; 19(1): 219, 2021 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-34526034

RESUMO

BACKGROUND: No specific scale to measure Quality of Life in Alzheimer's Disease in Nursing Homes (QoL-AD NH) exists in French. We aimed to translate and culturally adapt the QoL-AD NH participant scale into a French version and evaluate its psychometric properties with residents in French nursing homes (EHPAD). METHODS: First, the QoL-AD NH was cross-culturally adapted into French according to guidelines. Secondly, a convenience group of residents with mild to moderate dementia answered the Folstein's test and the QoL-AD NH. They also answered the Dementia Quality of Life and the Geriatric Depression Scale to test convergent and divergent validity. Known-group validity was tested with a comparison group of residents without dementia. Exploratory Structural Equation Modeling (ESEM) was used after Exploratory Factor Analysis (EFA) to identify factors and measure invariance across age and mental state groups. Reliability (internal consistency, McDonald's omega and test-retest) were also measured. RESULTS: Following successful adaptation of the QoL-AD NH, 174 residents (mean age 86.6) from 7 nursing homes with mild to moderate dementia participated in the validation study. We retained a 3-factor model of the scale after ESEM identifying: "Intra & interpersonal environment-related QoL", "Self-functioning-related QoL" and "Perceived current health-related QoL" that were invariant across age and mental state groups. The QoL-AD NH had acceptable convergent (ρ range 0.24-0.53) and divergent validity (ρ range - 0.43 to - 0.57) and good known-group validity with 33 residents without dementia (t(205) = 2.70, p = .007). For reliability, the results revealed very good and adequate internal consistency (α = 0.86 for total scale and ≥ 0.71 for subscales). All total omega values exceeded the threshold 0.70. The hierarchical omega was 0.50, supporting the multidimensionality of the scale. Hierarchical omega subscale values exceeded the minimal level 0.50 except for the third factor, although reliable, would deserve more items. Test-retest was good with ICC (3,1) = 0.76. CONCLUSIONS: The QoL-AD NH French participant version has globally good reliability and validity for evaluating residents' quality of life. However, further studies must rework and confirm the factor structure, test sensitivity to change and responsiveness.


Assuntos
Doença de Alzheimer/psicologia , Casas de Saúde , Psicometria/instrumentação , Qualidade de Vida/psicologia , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/diagnóstico , Comparação Transcultural , Características Culturais , Feminino , França , Instituição de Longa Permanência para Idosos , Humanos , Masculino , Reprodutibilidade dos Testes , Tradução
5.
BMC Public Health ; 21(1): 1791, 2021 10 05.
Artigo em Inglês | MEDLINE | ID: mdl-34610808

RESUMO

BACKGROUND: The COVID-19 pandemic has affected people's engagement in health behaviors, especially those that protect individuals from SARS-CoV-2 transmission, such as handwashing/sanitizing. This study investigated whether adherence to the World Health Organization's (WHO) handwashing guidelines (the outcome variable) was associated with the trajectory of the COVID-19 pandemic, as measured by the following 6 indicators: (i) the number of new cases of COVID-19 morbidity/mortality (a country-level mean calculated for the 14 days prior to data collection), (ii) total cases of COVID-19 morbidity/mortality accumulated since the onset of the pandemic, and (iii) changes in recent cases of COVID-19 morbidity/mortality (a difference between country-level COVID-19 morbidity/mortality in the previous 14 days compared to cases recorded 14-28 days earlier). METHODS: The observational study (#NCT04367337) enrolled 6064 adults residing in Australia, Canada, China, France, Gambia, Germany, Israel, Italy, Malaysia, Poland, Portugal, Romania, Singapore, and Switzerland. Data on handwashing adherence across 8 situations (indicated in the WHO guidelines) were collected via an online survey (March-July 2020). Individual-level handwashing data were matched with the date- and country-specific values of the 6 indices of the trajectory of COVID-19 pandemic, obtained from the WHO daily reports. RESULTS: Multilevel regression models indicated a negative association between both accumulation of the total cases of COVID-19 morbidity (B = -.041, SE = .013, p = .013) and mortality (B = -.036, SE = .014 p = .002) and handwashing. Higher levels of total COVID-related morbidity and mortality were related to lower handwashing adherence. However, increases in recent cases of COVID-19 morbidity (B = .014, SE = .007, p = .035) and mortality (B = .022, SE = .009, p = .015) were associated with higher levels of handwashing adherence. Analyses controlled for participants' COVID-19-related situation (their exposure to information about handwashing, being a healthcare professional), sociodemographic characteristics (gender, age, marital status), and country-level variables (strictness of containment and health policies, human development index). The models explained 14-20% of the variance in handwashing adherence. CONCLUSIONS: To better explain levels of protective behaviors such as handwashing, future research should account for indicators of the trajectory of the COVID-19 pandemic. TRIAL REGISTRATION: Clinical Trials.Gov, # NCT04367337.


Assuntos
COVID-19 , Pandemias , Alemanha , Desinfecção das Mãos , Humanos , SARS-CoV-2
6.
BMC Health Serv Res ; 20(1): 517, 2020 Jun 08.
Artigo em Inglês | MEDLINE | ID: mdl-32513157

RESUMO

BACKGROUND: Numerous studies have been conducted over the past 15 years to assess safety culture within healthcare facilities; in general, these studies have shown the pivotal role that managers play in its development. However, little is known about what healthcare managers actually do to support this development, and how caregivers and managers represent managers'role. Thus the objectives of this study were to explore: i) caregivers and managers' perceptions and representations of safety, ii) the role of managers in the development of safety culture as perceived by themselves and by caregivers, iii) managers' activities related to the development of safety culture. METHODS: An exploratory, multicentre, qualitative study was conducted from May 2014 to March 2015 in seven healthcare facilities in France. Semi-structured interviews were conducted with managers (frontline, middle and top level) and caregivers (doctors, nurses and nurse assistants) and on-site observations of two managers were carried out in all facilities. A thematic analysis of semi-structured interviews was performed. Observed activities were categorised using Luthans' typology of managerial activities. RESULTS: Participants in semi-structured interviews (44 managers and 21 caregivers) expressed positive perceptions of the level of safety in their facility. Support from frontline management was particularly appreciated, while support from top managers was identified as an area for improvement. Six main categories of safety-related activities were both observed among managers and regularly expressed by participants. However, caregivers' expectations of their managers and managerial perceptions of these expectations only partially overlapped. CONCLUSIONS: The present study highlights current categories of managerial activities that foster safety culture, and points out an important gap between caregivers' expectations of their managers, and managerial perceptions of these expectations. The findings underline the need to allow more time for managers and caregivers to talk about safety issues. The results could be used to develop training programs to help healthcare managers to understand their role in the development of safety culture.


Assuntos
Administradores de Instituições de Saúde , Papel Profissional , Gestão da Segurança/organização & administração , Adulto , Feminino , França , Instalações de Saúde , Administradores de Instituições de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
7.
J Psychosoc Oncol ; 38(1): 89-102, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31304892

RESUMO

Objective: To assess colorectal cancer survivors' quality of life (QoL) and fatigue according to stoma status.Methods: In this large-scale national survey, we examined and compared QoL (SF-12) and fatigue (QLQ-C30) of colorectal cancer survivors according to stoma status and against population norms. Of the 487 colorectal cancer survivors who participated in the VICAN survey, 43 had a reversed stoma. We randomly selected 43 survivors without stoma as a comparison group.Findings: Colorectal cancer survivors had lower QoL scores compared to population norms. Fatigue affected survivors even two years after diagnosis. Participants with a reversed stoma scored lower on the physical QoL scale than participants without stoma.Conclusion: QoL and fatigue are impaired during a considerable period after cancer diagnosis and differ according to stoma status.Implications for psychosocial providers: Interventions aimed at improving QoL and fatigue for colorectal cancer survivors should be offered on a long-term basis, even two years after diagnosis.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias Colorretais/cirurgia , Fadiga/epidemiologia , Qualidade de Vida , Estomas Cirúrgicos/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
8.
Psychol Health Med ; 22(4): 434-448, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27687292

RESUMO

Surgeons are experiencing difficulties implementing recommendations not only owing to incomplete, confusing or conflicting information but also to the increasing involvement of patients in decisions relating to their health. This study sought to establish which common factors including heuristic factors guide surgeons' decision-making in colon and rectal cancers. We conducted a systematic literature review of surgeons' decision-making factors related to colon and rectal cancer treatment. Eleven of 349 identified publications were eligible for data analyses. Using the IRaMuTeQ (Interface of R for the Multidimensional Analyses of Texts and Questionnaire), we carried out a qualitative analysis of the significant factors collected in the studies reviewed. Several validation procedures were applied to control the robustness of the findings. Five categories of factors (i.e. patient, surgeon, treatment, tumor and organizational cues) were found to influence surgeons' decision-making. Specifically, all decision criteria including biomedical (e.g. tumor information) and heuristic (e.g. surgeons' dispositional factors) criteria converged towards the factor 'age of patient' in the similarity analysis. In the light of the results, we propose an explanatory model showing the impact of heuristic criteria on medical issues (i.e. diagnosis, prognosis, treatment features, etc.) and thus on decision-making. Finally, the psychosocial complexity involved in decision-making is discussed and a medico-psycho-social grid for use in multidisciplinary meetings is proposed.


Assuntos
Tomada de Decisão Clínica/métodos , Neoplasias Colorretais/terapia , Fidelidade a Diretrizes/estatística & dados numéricos , Cirurgiões/estatística & dados numéricos , Humanos
9.
Int J Nurs Pract ; 23(2)2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28150417

RESUMO

AIM: We explored the positions of nurses working in hospitals regarding the acceptability of refusing to give a repeat dose of painkiller to a postoperative patient who requested it. These positions were compared with that of lay people, physicians, and other health professionals. DESIGN AND METHODS: Factorial design was used to assess the impact of 6 situational factors: the patient's age, the current level of pain as assessed by the nurse, the number of requests, the level of risk associated with the administration of a repeat dose, the outcome of surgery, and the giving of alternative mild analgesics. We implemented a combination of scenario technique and of cluster analysis. Data were collected from April 2013 to December 2015. PARTICIPANTS: 138 registered nurses, 32 nurse's aides, 33 physicians, 23 psychologists, and 169 lay people participated in the study. RESULTS: We found 4 qualitatively different meaningful positions. A plurality of participants (57% of nurses) considered that refusing was not acceptable, irrespective of circumstances. A substantial minority of participants (but 52% of physicians) considered that refusing was acceptable only if the level of pain was low and the risk was high. Other participants (mostly lay people) considered that refusing was always acceptable each time a risk of side effects, either serious or simply mild, was present.


Assuntos
Atitude do Pessoal de Saúde , Recursos Humanos de Enfermagem Hospitalar/psicologia , Manejo da Dor/ética , Medição da Dor/ética , Dor Pós-Operatória/diagnóstico , Dor Pós-Operatória/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise por Conglomerados , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor Pós-Operatória/etiologia
10.
Rev Infirm ; 71(283): 45-46, 2022.
Artigo em Francês | MEDLINE | ID: mdl-36427942
11.
BMC Cancer ; 16: 262, 2016 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-27044252

RESUMO

BACKGROUND: Among patients with rectal cancer, 5-10% have a primary rectal cancer beyond the total mesorectal excision plane (PRC-bTME) and 10% recur locally following primary surgery (LRRC). In both cases, patients 'care remains challenging with a significant worldwide variation in practice regarding overall management and criteria for operative intervention. These variations in practice can be explained by structural and organizational differences, as well as cultural dissimilarities. However, surgical resection of PRC-bTME and LRRC provides the best chance of long-term survival after complete resection (R0). With regards to the organization of the healthcare system and the operative criteria for these patients, France and Australia seem to be highly different. A benchmarking-type analysis between French and Australian clinical practice, with regards to the care and management of PRC-bTME and LRRC, would allow understanding of patients' care and management structures as well as individual and collective mechanisms of operative decision-making in order to ensure equitable practice and improve survival for these patients. METHODS/DESIGN: The current study is an international Benchmarking trial comparing two cohorts of 120 consecutive patients with non-metastatic PRC-bTME and LRRC. Patients with curative and palliative treatment intent are included. The study design has three main parts: (1) French and Australian cohorts including clinical, radiological and surgical data, quality of life (MOS SF36, FACT-C) and distress level (Distress thermometer) at the inclusion, 6 and 12 months; (2) experimental analyses consisting of a blinded inter-country reading of pelvic MRI to assess operatory decisions; (3) qualitative analyses based on MDT meeting observation, semi-structured interviews and focus groups of health professional attendees and conducted by a research psychologist in both countries using the same guides. The primary endpoint will be the clinical resection rate. Secondary end points will be concordance rate between French and Australian operative decisions based on the inter-country reading MRI, post-operative mortality and morbidity rates, oncological outcomes based on resection status and one-year overall and disease-free survival, patients' quality of life and distress level. Qualitative analysis will compare obstacles and facilitators of operative decision-making between both countries. DISCUSSION: Benchmarking can be defined as a comparison and learning process which will allow, in the context of PRC-bTME and LRRC, to understand and to share the whole process management of these patientsbetween Farnce and Australia. TRIAL REGISTRATION: NCT02551471 . (date of registration: 09/14/2015).


Assuntos
Benchmarking , Recidiva Local de Neoplasia/patologia , Neoplasias Retais/patologia , Adulto , Idoso , Austrália , Procedimentos Cirúrgicos do Sistema Digestório , Intervalo Livre de Doença , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/epidemiologia , Recidiva Local de Neoplasia/cirurgia , Neoplasias Retais/epidemiologia , Neoplasias Retais/cirurgia
12.
Psychooncology ; 23(3): 307-14, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24123416

RESUMO

OBJECTIVES: The Basic Documentation for Psycho-Oncology (PO-Bado) is a semi-directive instrument for assessing psychosocial difficulties in cancer patients. It is based on subjective status and not on degree of symptom severity. Our objectives were to assess whether use of the PO-Bado during post-cancer-diagnosis consultations improves the quality of communication by establishing a supportive relationship between nurses and patients and to assess nurses' satisfaction of their communication skills. METHODS: Data were collected from post-diagnosis 'bad-news' consultations across four Cancer treatment centres in South West France. Eleven nurses who had never used the PO-Bado ('inexperienced group') received training on the instrument (short-form). Twenty-one pre-training consultations without the PO-Bado were recorded and compared with 21 post-training consultations with the PO-Bado. Twenty consultations with four nurses with experience using the PO-Bado ('experienced group') were included for between-group comparisons. Nurses' satisfaction was evaluated through semi-directive consultations at the end of the study and completed by a visual analogue scale. RESULTS: We transcribed and analysed 62 consultations. We observed greater use of techniques encouraging patient expression in consultations with PO-Bado-experienced nurses (p < 0.01); after PO-Bado training for 'inexperienced' nurses (p < 0.05) and less use of non-encouraging techniques after PO-Bado training for 'inexperienced' nurses (p < 0.01). Nurses felt more satisfied with their communications skills after PO-Bado training and stated that they felt more competent, particularly for referrals to psychologists. CONCLUSIONS: The PO-Bado is beneficial for the quality of the communication between nurses and patients at bad-news delivery consultations and for the satisfaction of nurses with regard to their relational skills.


Assuntos
Comunicação , Programas de Rastreamento/instrumentação , Neoplasias/diagnóstico , Neoplasias/psicologia , Enfermagem Oncológica/educação , Apoio Social , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Adulto , Feminino , França , Humanos , Masculino , Programas de Rastreamento/métodos , Pessoa de Meia-Idade , Relações Enfermeiro-Paciente , Enfermeiras e Enfermeiros , Avaliação de Programas e Projetos de Saúde , Encaminhamento e Consulta , Estresse Psicológico/etiologia
13.
Bull Cancer ; 111(1): 8-17, 2024 Jan.
Artigo em Francês | MEDLINE | ID: mdl-37996315

RESUMO

INTRODUCTION: Three clinical situations explored the interactions between patients treated for cancer in oncology, their family caregivers working as doctors or nurses in the same establishment or service, and the healthcare team providing the patient's care, as well as the repercussions of such a context on these three players. METHODS: In each situation, the patient, the family caregiver and a member of the team were interviewed using a semi-directive interview guide. The 8 interviews were recorded and transcribed in full, then subjected to thematic content analysis. RESULTS: The tension between "wanting to stay in their place as a relative" and facilitating/accelerating the patient's medical journey was heightened when the patient is being cared for in the institution/service in which the family's caregiver works. The healthcare team reported additional psychological pressure, but few arrangements are made by the team to support the specific nature of these situations. Various factors, such as the severity of the illness, the closeness of the relationship between the caregiver and the patient, existence of a hierarchical link between the caregiver and the team, and the presence of the caregiver on the ward, seemed to potentiate the difficulties felt by the healthcare team and the individual suffering of the caregiver. DISCUSSION: These situations generated intra- and interpersonal psychological tensions for all concerned, each oscillating between their status as family caregiver and healthcare professional, or as colleague and healthcare professional. These situations have raised ethical and psychological questions for all involved, which need to be anticipated.


Assuntos
Cuidadores , Neoplasias , Humanos , Cuidadores/psicologia , Emoções , Local de Trabalho , Neoplasias/terapia , Atenção à Saúde
14.
Psychol Health Med ; 18(6): 698-704, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23387298

RESUMO

This study investigated factors associated with social isolation in parents of children with hemangiomas. Eighty-one parents completed questionnaires assessing their emotional distress, social isolation, and coping styles. To explore the relationships between these variables, a path analysis was used to test a model in which clinical characteristics of hemangiomas and parents' coping strategies do not have direct effects on their social isolation but indirect effects via their emotional distress. Bootstrapping was used to assess indirect effects. Time since onset and lesional complications had positive direct effects on parents' social isolation. Lesional visibility and emotion-focused coping had negative indirect effects on parents' social isolation via their emotional distress, while problem-focused coping showed a positive indirect effect. These findings may have implications for clinicians managing parents of children with hemangiomas.


Assuntos
Adaptação Psicológica , Hemangioma/psicologia , Pais/psicologia , Isolamento Social/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Funções Verossimilhança , Masculino , Modelos Psicológicos , Estresse Psicológico/etiologia , Inquéritos e Questionários
15.
Orphanet J Rare Dis ; 18(1): 39, 2023 02 23.
Artigo em Inglês | MEDLINE | ID: mdl-36823650

RESUMO

BACKGROUND: Since the beginning of human genetic research, there are very few publications sharing insights of the negative impact of rare genetic skin diseases (RGSD) on patients' experiences. This systematic review assessed the psychosocial implications of these conditions in terms of daily life experiences, emotional state, self-perception, and Quality of Life (QoL). METHODOLOGY: A systematic review was carried out on albinism, neurofibromatosis type 1 (NF1), birthmarks and inherited ichthyosis. The PubMed, Scopus, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection, and SOCindex databases were queried. Inclusion criteria were adult patients with one of these RGSDs. Simple descriptive statistics and qualitative content analysis were conducted to summarize the main results reported by the authors. RESULTS: Of the 9987 articles retrieved, 48 articles were included: albinism (16), NF1 (16), inherited ichthyosis (10), birthmarks (6). The majority of the studies on albinism were conducted in Africa. Twenty-seven studies quantitatively assessed diverse psychological parameters: 13 showed a significant impact of the disease on QoL, five on emotional state, two on self-representation and two others on psychiatric comorbidities. Disease severity and visibility were good predictors of QoL (except for albinism). Body image and appearance concerns were also associated with QoL and emotional state. The 19 qualitative studies highlighted recurring themes across each of these diseases: discrimination and stigma during childhood and adolescence, discomfort in social interactions, guilt of transmission, the importance of social support from family and friends, altered daily life functioning, altered romantic and sex life, limited academic and professional aspirations, lack of interest and support from the medical field, and the unpredictability of the evolution of the disease. The only two mixed-method studies in this review were unable to contribute to any inferential analyses but could corroborate some of the qualitative findings. CONCLUSION: These results showed that RGSDs have a significant impact on different aspects of patients' lives. This review has demonstrated that there is a real need for support systems for patients with these diseases. Such systems should be developed to provide them with necessary information and to guide them through an appropriate care pathway.


Assuntos
Qualidade de Vida , Dermatopatias Genéticas , Adulto , Humanos , Acontecimentos que Mudam a Vida , Recidiva Local de Neoplasia , Qualidade de Vida/psicologia , Autoimagem
16.
Artigo em Inglês | MEDLINE | ID: mdl-37174272

RESUMO

The risks of developing cancer are significantly affected by our lifestyle and environment. While there are several uncontrollable risk factors, we can modify our lifestyle and our environment to reduce the increased threat of cancer. This systematic review aims to evaluate the methodological assessment used to evaluate attitudes about cancer risk factors among the general population. Two researchers independently screened the articles for inclusion and Critical Appraisal Skills Programme (CASP) checklists were used to assess the methodology of the included studies. Thirty-one manuscripts met the inclusion criteria with a majority of them focusing on attitudes to several cancer risk factors and six on specific cancer location risk factors. This systematic review highlights the diversity of notions used around attitudes and methods used in the method of administering the survey, as well as the format of the questions and the response scales. It is thus difficult to compare data between different countries. However, cancer is a global problem. Harmonizing methods could allow a comparison of data between countries. Recommendations to this effect are suggested.


Assuntos
Atitude , Neoplasias , Humanos , Adulto , Estilo de Vida , Neoplasias/epidemiologia , Neoplasias/etiologia , Fatores de Risco
17.
Infect Dis Health ; 28(1): 54-63, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36123289

RESUMO

BACKGROUND: Respiratory hygiene, especially in context of COVID-19, is of upmost importance. Healthcare professionals (HCPs) play an important role in the prevention of infections. Their perceptions of the subject are needed to tailor effective communication and training on prevention. METHODS: 20 French HCPs were questioned about their perceptions on respiratory hygiene and infections, by the means of recorded semi-structured interviews and a focus group. The interviews and focus group were transcribed then analysed through lexicometric and thematic content analyses. RESULTS: HCP discourse revolved around the use of face masks, the prevention and the characteristics of respiratory infections and the means to prevent them.COVID-19 excepted, HCPs considered respiratory infections as benign. They associated respiratory hygiene to the observance of cough etiquette, the preservation of lung health, the act of protecting oneself and others, and the adherence to safety protocols. Main barriers to good practices were organizational ones, such as the lack of consultation and mobilization of HCPs in the development of preventive measures, suboptimal information sharing and the physical and relational constraints of face masks. They advised means of improving communication and information promotion. CONCLUSION: Since the pandemic crisis, HCPs have developed a better awareness about the prevention of respiratory infections. Except for COVID-19, respiratory infections are mostly considered as benign. Barriers and facilitators evoked by HCPs will help to build national communication and tools.


Assuntos
COVID-19 , Infecções Respiratórias , Humanos , SARS-CoV-2 , COVID-19/prevenção & controle , Pessoal de Saúde/educação , Infecções Respiratórias/prevenção & controle , Pandemias/prevenção & controle
18.
Soc Sci Med ; 317: 115569, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36436259

RESUMO

RATIONALE: The associations between the number of COVID-19 cases/deaths and subsequent uptake of protective behaviors may reflect cognitive and behavioral responses to threat-relevant information. OBJECTIVE: Applying protection motivation theory (PMT), this study explored whether the number of total COVID-19 cases/deaths and general anxiety were associated with cross-situational handwashing adherence and whether these associations were mediated by PMT-specific self-regulatory cognitions (threat appraisal: perceived vulnerability, perceived illness severity; coping appraisal: self-efficacy, response efficacy, response costs). METHOD: The study (#NCT04367337) was conducted in March-September 2020 among 1256 adults residing in 14 countries. Self-reports on baseline general anxiety levels, handwashing adherence across 12 situations, and PMT-related constructs were collected using an online survey at two points in time, four weeks apart. Values of COVID-19 cases and deaths were retrieved twice for each country (one week prior to the individual data collection). RESULTS: Across countries and time, levels of adherence to handwashing guidelines were high. Path analysis indicated that smaller numbers of COVID-19 cases/deaths (Time 0; T0) were related to stronger self-efficacy (T1), which in turn was associated with higher handwashing adherence (T3). Lower general anxiety (T1) was related to better adherence (T3), with this effect mediated by higher response efficacy (T1, T3) and lower response cost (T3). However, higher general anxiety (T1) was related to better adherence via higher illness severity (T1, T3). General anxiety was unrelated to COVID-19 indicators. CONCLUSIONS: We found a complex pattern of associations between the numbers of COVID-19 cases/deaths, general anxiety, PMT variables, and handwashing adherence at the early stages of the pandemic. Higher general anxiety may enable threat appraisal (perceived illness severity), but it may hinder coping appraisal (response efficacy and response costs). The indicators of the trajectory of the pandemic (i.e., the smaller number of COVID-19 cases) may be indirectly associated with higher handwashing adherence via stronger self-efficacy.


Assuntos
COVID-19 , Adulto , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Desinfecção das Mãos , Estudos Longitudinais , Motivação , Pandemias/prevenção & controle
19.
Front Psychol ; 13: 827947, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35756231

RESUMO

Background: Cancer diagnosis and treatment represent a real upheaval both for the patient and for his or her life partner. Adjustment to cancer has been widely studied at the individual level, however, there is little in the literature about the experiences of the couple as an entity. This is especially true with regard to a population facing advanced cancer. This systematic review aimed to make an inventory of 1) the current knowledge relating to the experience of the patient-partner dyad when confronted with advanced cancer, and 2) the psychosocial interventions specifically centered on this dyad. Method: This review was conducted using the Cochrane methodology. The eligibility criteria for the literature review were: one of the members of the dyad being treated for advanced cancer, dyad composed of the patient and his/her life partner. Databases from PubMed, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection and Scopus were investigated. A thematic content analysis on the basis of admitted articles made it possible to respond to each of our research objectives. Results: Three hundred eighty-nine citations were found. Twenty were admitted to the systematic review of the literature. It highlighted the following experiences of the advanced cancer patient-life partner dyad: uncertainty about the future, disjointed time, intrusion into the couple's intimacy, attachment style and caregiving within the couple, couple's adjustment to cancer symptomatology, the couple's supportive care needs, role changes, nature of communication within the couple, anticipation of the coming death, and the meanings and beliefs around death. This review also describes the range of couple therapies used in the context of advanced cancer: emotionally focused-couple therapy, existential therapy, art therapy, support therapy and couple communication and intimacy promotion. These therapies seem to have individual beneficial effects for both the patient and his or her life partner as well as improving marital functioning. Conclusions: These results clearly highlight that consideration of the couple and communication within the couple during care are fundamental to dyadic adjustment to advanced cancer. Further studies (qualitative and quantitative) are needed to better understand the couple's experience in order to adapt the management of the couple facing advanced cancer.

20.
J Hosp Palliat Nurs ; 24(2): E18-E25, 2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-35212663

RESUMO

This comparative and exploratory multicenter study explored the experiences of 2 groups of family members caring for relatives in palliative phases of cancer: caregivers practicing health care professionals (doctors/nurses) and caregivers who were not health care professionals. The ill family members of the 2 groups were also interviewed. Twenty-seven volunteer caregiving relatives (including 16 health professionals) and 18 cancer patients participated in psychologist-conducted semistructured interviews exploring psychological experiences of the support (including daily, personal, and medical care) and, for caregivers, of the interactions with medical teams. Interviews were recorded and transcribed for inductive thematic analysis. Caregiving relatives, irrespective of their profession, all reported developing closer bonds with their relative since the cancer diagnosis and being highly involved in the palliative care. They also all reported psychological stress with additional stress linked to health care professionals' acute knowledge of the disease and treatments often experienced as a burden. Whereas non-health care professional caregivers reported hope for favorable disease progression, health professional caregivers did not. Interactions with the health care team were generally described as satisfactory. A minority of health care professional caregivers reported difficulties when the health care team perceived their investment in the patient's care as negative. Patients' perceptions were consistent with caregiver perceptions.


Assuntos
Neoplasias , Cuidados Paliativos , Cuidadores/psicologia , Família/psicologia , Pessoal de Saúde/psicologia , Humanos , Neoplasias/complicações , Neoplasias/terapia , Cuidados Paliativos/psicologia
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