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1.
Pflege ; 2024 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-38294181

RESUMO

Background: Topical corticosteroids (TCS) are the mainstay of therapy for paediatric atopic dermatitis (AD). The use of TCS is often met with fear by parents. Assessing this parental TCS fear in clinical practice is still lacking. Aim: The aim was to assess parental fear and beliefs about TCS. Furthermore, we evaluated the quality of life (QoL) of the family and the disease severity of affected children. Methods: We conducted an observational study with a cross-sectional design. Inclusion criteria were children aged 0 to 5 years with a diagnosis of AD and outpatient treatment. The outcome measures were parental fears and beliefs about TCS, assessed with the "Topical Corticosteroid Phobia Score" (TOPICOP), parental QoL evaluated with the "Family Dermatology Life Quality Index", and disease severity, assessed with the "Scoring atopic dermatitis" (SCORAD). Descriptive statistic was used to analyse the data. Results: The current study found that in 40 affected children, 25 (62.5%), suffered from mild AD, 12 (30%) children had moderate AD, and 3 (7.5%) children had severe AD. TCS fear among parents was notable (mean TOPICOP score 18.1, standard deviation (SD) 7.1). The QoL was moderately affected (mean FDLQI score 6.5, SD 2.8). Conclusions: Our study indicates that fear of TCS is prevalent. Furthermore, our data indicate that severity of TCS fear varies markedly between parents, ranging from parents with almost no fear to parents with high levels of fear. For effective education in clinical practice, the individual level of fear must be recognized and taken into account.

2.
Patient Educ Couns ; 116: 107936, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37598585

RESUMO

OBJECTIVE: This integrative review investigates the modalities, characteristics, and efficacy of educational nurse-led interventions for parents of children with atopic dermatitis (AD). METHODS: We conducted an integrative review with the following inclusion criteria: Quantitative, qualitative and mixed-method studies written in English or German and published between 1 January 2000 and 31 December 2021. We searched for entirely nurse-led interventions. RESULTS: Four RCTs, three pre-post studies without control groups, and one post-test study without control group met the inclusion criteria. Nurse-led interventions were found to have medium to large positive effect sizes on disease severity, and none to large positive effects on quality of life. There was significant heterogeneity across study designs with a wide variety in educational interventions and outcome measures used. The quality of most included studies was low. CONCLUSION: Nurse-led educational interventions for parents of children with AD are beneficial in reducing disease severity. However, it remains unclear, which main components of the nurse-led intervention are most effective. PRACTICE IMPLICATIONS: Based on the results of this review, we think that trained and qualified nurses who are part of the entire treatment of children with AD and do as well educational interventions have the greatest potential to improve outcomes.


Assuntos
Dermatite Atópica , Criança , Humanos , Dermatite Atópica/terapia , Qualidade de Vida , Papel do Profissional de Enfermagem , Pais , Avaliação de Resultados em Cuidados de Saúde
3.
Adv Skin Wound Care ; 36(8): 414-419, 2023 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-37471446

RESUMO

OBJECTIVE: To investigate the efficacy of educational videos using storytelling to reduce parents' fear of topical corticosteroid (TCS) use in children affected by atopic dermatitis (AD). METHODS: Children aged 0 to 5 years who had AD were included. The primary outcome measures were parental fear of TCSs, as determined by Topical Corticosteroid Phobia score, and quality of life according to the Family Dermatology Life Quality Index. Disease severity, assessed by the Scoring Atopic Dermatitis tool, served as a secondary outcome measure. Assessments were performed at baseline (T1), 1 to 4 weeks later (T2), and at 3-month follow-up (T3). The intervention group was exposed to the videos between baseline and T2. RESULTS: Forty patients were recruited: 21 in the intervention group and 19 in the control group. A statistically significant decrease in parental TCS fear was found in the intervention group at T2 after video education as compared with the control group (P < .0001); this was maintained at T3 (P = .001). The groups did not significantly differ in FDLQI or SCORAD scores at any point. CONCLUSIONS: These findings suggest that video education based on the method of storytelling is effective in reducing TCS fear. Although the education did not impact disease severity or quality of life, effectively reducing TCS fear remains an important aspect for AD management.


Assuntos
Dermatite Atópica , Fármacos Dermatológicos , Humanos , Criança , Dermatite Atópica/tratamento farmacológico , Qualidade de Vida , Pais/educação , Corticosteroides , Glucocorticoides , Medo , Índice de Gravidade de Doença , Resultado do Tratamento
4.
Nurs Open ; 10(6): 3787-3798, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36852528

RESUMO

AIM: Nurse-led care aims to optimize the discharge preparation with a focus on increasing patients' independency and self-care abilities. This study compared patients' improvements of self-care abilities and frequency of readmission rate between nurse-led care and regular nursing care within the acute hospital setting. DESIGN: A quasi-experimental design within a real-world setting was used for this work. METHODS: We included a pool of 2501 patients from a control group (medically stable in usual care) and 420 patients from an intervention group (nurse-led care). After propensity score matching, the study cohort consisted of 612 patients. RESULTS: From admission to discharge, nurse-led care patients showed superior improvements of total self-care abilities compared to usual care patients. In particular, we found improvements in the following categories: mobility, grooming and excretion. Patients with nurse-led care were furthermore less frequently readmitted to hospital compared with the control group patients. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.


Assuntos
Papel do Profissional de Enfermagem , Autocuidado , Humanos , Readmissão do Paciente , Relações Enfermeiro-Paciente , Alta do Paciente
5.
Pflege ; 33(6): 397-403, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33236694

RESUMO

Storytelling as an innovative method of video-based education for parents of children with atopic dermatitis Abstract. Background: Atopic Dermatitis (AD) is the most chronic skin disease in children and affects up to 20 % of children in developed countries. Chronic inflammation of the skin, itching, redness, and non-dermatologic symptoms like sleep disturbance are frequent and have a negative impact on the child's quality of life and their family. Education is one of the most important aspects of managing AD. Aim: Production and evaluation of educational videos with the method storytelling for parents of children aged 0 to 5 years with atopic dermatitis. Methods: We produced the videos with the method of storytelling. The aim of storytelling is to help to recall important information more easily. A multi-professional team and parents of affected children tested the videos to ensure the understandability, the helpfulness and importance of the educational videos. Results: We created six different videos in all. The content of the educational videos includes information on the causes of AD, symptoms, skin care, treatment instruction and living with AD. We implemented the method of storytelling by two families with affected children who reported about their experience with the disease and the treatment. Three different specialists gave expert information. The evaluation showed that the information in the videos is simple, understandable and relevant. Conclusions: Evidence-based videos are an innovative, creative and modern method to support education. Storytelling is a user-friendly method to give simple and understandable information.


Assuntos
Dermatite Atópica , Educação de Pacientes como Assunto , Transtornos do Sono-Vigília , Gravação em Vídeo , Criança , Pré-Escolar , Doença Crônica , Dermatite Atópica/complicações , Dermatite Atópica/diagnóstico , Dermatite Atópica/terapia , Humanos , Lactente , Recém-Nascido , Pais , Qualidade de Vida , Transtornos do Sono-Vigília/etiologia
6.
Pediatr Dermatol ; 37(6): 1183-1184, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32901971

RESUMO

We report the case of a 10-year-old girl with bullous Sweet syndrome, recalcitrant to high-dose systemic corticosteroids. Subsequent treatment with infliximab resulted in a rapid improvement in cutaneous lesions and systemic symptoms. Cutis laxa was noted in the healed skin. We propose early second-line treatment with infliximab in children with steroid-refractory Sweet syndrome.


Assuntos
Cútis Laxa , Síndrome de Sweet , Criança , Feminino , Humanos , Infliximab/uso terapêutico , Pele , Síndrome de Sweet/diagnóstico , Síndrome de Sweet/tratamento farmacológico
7.
JAMA Dermatol ; 156(8): 907-911, 2020 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-32459284

RESUMO

Importance: Netherton syndrome (NS) is a rare, severe genetic disorder of cornification with high morbidity. Treatment for NS has been notoriously difficult. Recent studies showed an upregulated helper T cell (TH) 17/interleukin 23 (IL-23) pathway in NS, suggesting the possibility of treatment strategies that target IL-17. Objective: To evaluate the clinical response of NS to treatment with the IL-17 antagonist secukinumab. Design, Setting, and Participants: This case series study reports the experience of compassionate use therapy with secukinumab in 4 patients with severe NS, including 2 children, from December 1, 2018, to December 1, 2019, with 3 patients still undergoing treatment at the time of final analysis. Data were analyzed from December 1, 2018, to December 1, 2019. Main Outcomes and Measures: Expression of IL-17 in the skin was evaluated by immunohistochemical analysis, and serum cytokine concentrations were measured using a commercially available assay. Treatment response was assessed using the Ichthyosis Area and Severity Index (IASI) total score, including measures of erythema and scaling, the Dermatology Life Quality Index (DLQI), and the 5-D itch scale. Results: In all 4 patients (age range, 9-27 years; 3 male and 1 female), immunostaining with an IL-17A antibody showed an increased number of positive cells in lesional skin. Cytokine assessment in serum samples revealed increased levels of CCL20. Treatment duration with secukinumab was 3 to 12 months at the time of this report. After 3 months of therapy, IASI scores were reduced by 44% to 88%, DLQI scores were reduced by 40% to 76%, and 5-D itch scale scores were reduced by 27% to 62%. This outcome was sustained at the 6-month follow-up. Two patients with an erythrodermic phenotype showed marked improvement of all parameters. A refractory palmoplantar eczematous eruption occurred in 2 patients, and a candidal nail infection developed in 2 patients. No severe adverse events were reported. Conclusions and Relevance: This initial case series reporting the use of anti-IL-17 therapy in NS demonstrated marked cutaneous improvement, particularly in 2 pediatric patients with erythrodermic phenotypes. Further studies are needed to evaluate the long-term benefit of this potential treatment modality.


Assuntos
Anticorpos Monoclonais Humanizados/uso terapêutico , Fármacos Dermatológicos/uso terapêutico , Síndrome de Netherton/tratamento farmacológico , Adulto , Anticorpos Monoclonais Humanizados/efeitos adversos , Quimiocina CCL20/sangue , Criança , Ensaios de Uso Compassivo , Fármacos Dermatológicos/efeitos adversos , Feminino , Humanos , Interleucina-17/metabolismo , Masculino , Síndrome de Netherton/complicações , Síndrome de Netherton/metabolismo , Onicomicose/induzido quimicamente , Fenótipo , Prurido/etiologia , Qualidade de Vida , Índice de Gravidade de Doença , Pele/metabolismo , Adulto Jovem
8.
Pflege ; 28(2): 111-21, 2015 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-25813574

RESUMO

BACKGROUND: The care of an elderly frail and ill family member places a great responsibility on informal caregivers. Following discharge of the older person from the hospital setting it can be observed that caregivers are often inadequately informed about aspects such as health status, prognosis, complications, and care interventions. Concerns and needs of caregivers regarding their daily living and routine following hospital discharge has not been investigated and is considered important for an optimized discharge management. AIM: To explore personal needs and concerns of informal caregivers with regard to daily living prior to discharge of their family member. METHOD: Eight narrative interviews were conducted with caregivers and were analysed using Mayring's content analysing method. RESULTS: All caregivers had concerns regarding the maintenance of a functional daily routine. As well as caring and household duties, this functional daily routine included negotiating one's own personal time off duties, the reality of the deteriorating health status of the family member and the associated sense of hope. The intensity of family ties affected the functional daily routine. Caregivers had different expectations with regard to their integration during the hospital period. CONCLUSIONS: To support caregivers in their situation it is advisable to assess the functional daily routine of caregivers. Their need for time off their household and caring duties and their informational and educational needs to pertaining to disease progression, possible sources of support and symptom management should be recognised. Further inquiries into caregiver's involvement and responsibilities in the discharge process are needed.


Assuntos
Cuidadores/psicologia , Doença Crônica/enfermagem , Doença Crônica/psicologia , Idoso Fragilizado , Necessidades e Demandas de Serviços de Saúde , Alta do Paciente , Atividades Cotidianas/classificação , Atividades Cotidianas/psicologia , Idoso , Idoso de 80 Anos ou mais , Avaliação da Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Suíça
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