The psychosocial impact of chronic wounds on patients with severe epidermolysis bullosa

Adni, T; Martin, Katherine; Mudge, Elizabeth Joan

doi:10.12968/jowc.2012.21.11.528

Cited by 23 publications

(59 citation statements)

References 35 publications

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“…Besides the limited subject population (only arterial and neuropathic ulcer patients) and the limited scope of photos (only ulcers, maggots, and flies), some may consider this investigation to be limited by the fact that only “disgust” was evaluated, and that was evaluated only with images. Decisional conflicts have been studied in much greater depth using detailed questionnaires or in‐person subject‐centred interviews . Such studies are valuable because they can identify the breadth of attitudes and the factors associated with them.…”

Section: Discussionmentioning

confidence: 99%

“…This point brings up an important limitation of this study: we have assessed only relative degrees of disgust within the limited context of wounds and maggots, but we have not quantified that disgust in any significant degree nor mapped it out relative to the larger landscape of woundrelated attitudes and fears about pain, body image, social relationships, professional responsibilities, and emotional health. 23,24 We have not identified where "disgust of maggots" lies on the spectrum that includes subjects' attitudes towards other medical and surgical interventions or potential disabilities and disfigurements. 25 In short, we have not really determined whether or not these attitudes of relative disgust are sufficient to prevent these or other patients from consenting to maggot therapy should the need for such therapy arise.…”

Section: Discussionmentioning

confidence: 99%

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Survey of patients of the Tver region of Russia regarding maggots and maggot therapy

Морозов

Sherman

2018

International Wound Journal

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The 21st century is seeing a resurgence in the use of maggot therapy—using the physical and biochemical benefits of fly larvae to debride and heal chronic, problematic wounds. Maggots are repulsive to many people, and this could interfere with the acceptance of this modality. Before instituting a maggot therapy programme at our institution, we sought to better understand the psychological barriers that may exist among patients in the Tver region of Russia. Between 2014 and 2016, all patients with arterial insufficiency and trophic ulcers at City Clinical Hospital No. 7 in Tver were administered a survey consisting of six images. Subjects were asked to rank the images in the order of least to most repulsive or disgusting. A total of 576 subjects were recruited for this study: 414 (72%) women and 162 (28%) men. Nearly 60% of subjects considered the images of maggots to be more repulsive than images of gangrenous wounds. This finding is significant because it indicates that much education and support will need to be conducted to address patient fears and anxiety if patients are to be comfortable with a maggot therapy programme.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Survey of patients of the Tver region of Russia regarding maggots and maggot therapy

Морозов

Sherman

2018

International Wound Journal

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“…A large proportion of persons suffering from the disease consists of children and young adults. The studies are conducted on: -the demand for multi-dimensional care [5], including psychological support [3,4,6]; -the feeling of differentness and exclusion from peer groups [6,7]; -the influence of EB on the quality of life [2,8,9], -the influence of EB on the patient's family [8][9][10].…”

mentioning

confidence: 99%

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

Mącik¹,

Kowalska-Dąbrowska²

2015

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Introduction. Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known about the disease from the medical perspective, but there are still only a few studies about the psychological condition of the patient or his family. The birth of a child with EB may become a trauma for the parents. Parents' feelings also vary depending on the type of EB. Objective. The main aim of the study was to determine whether, and in what way, having a child suffering from EB influences parents' life and psychological well-being. Due to this aim, life satisfaction, life attitudes and the need for social support were measured. Material and methods. Twenty-one parents of ill children were studied (13 mothers, 8 fathers; 16 parents had one child with EB and 5 parents two). Six children suffered from EB simplex, 1 child from junctional EB and 14 from dystrophic EB. The course of the disease was mild in 9 children and severe in 12. As the control group 22 parents of healthy children were chosen. Results. The parents of ill children have a greater need for social support from family, both general, and instrumental, appraisal and emotional. The need for support from medical institutions is at a low level. In life attitudes there are also significant differences. Parents of ill children have a higher level of existential vacuum, and a lower level of life control and life purpose. Also the life satisfaction is lower. Conclusions. The results of our study indicate that a child suffering from EB is a heavy burden for the parents. streszczenie Wprowadzenie. Epidermolysis bullosa (EB) jest grupą rzadkich genetycznych chorób skóry, pojawiających się raz na kilkaset urodzeń. Z medycznego punktu widzenia choroba jest dobrze poznana, ale wciąż niewiele jest opracowań dotyczących problemów psychologicznych chorego i jego rodziny. Narodziny dziecka z EB mogą stać się specyficznym rodzajem traumy dla jego rodziców, a ich odczucia zależą również od typu i przebiegu choroby. W części piśmiennictwa sugeruje się, że EB jest obciążeniem nie tylko dla chorego, lecz także dla jego rodziny. Cel pracy. Głównym celem prezentowanych badań było sprawdzenie, czy i w jaki sposób posiadanie dziecka chorego na EB wiąże się z różny-the need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa zapotrzebowanie na wsparcie społeczne, postawy życiowe i satysfakcja z życia rodziców dzieci chorych na epidermolysis bullosa

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“…O tratamento de tais lesões na população com EB apresenta diversos desafios, entre eles a variabilidade clínica para um plano de gestão individualizada, pois a disponibilidade de vários produtos para o tratamento das feridas dificulta o processo de decisão, além do grande custo dessas coberturas para o orçamento da família e para as unidades de saúde 12,15,16 .…”

Section: Descriptoresunclassified

“…As feridas crônicas da EB são consideradas pelos pacientes como inerentes a eles, já que tentam aceitar a condição de saúde e até mesmo se esforçam para ter uma vida normal, apesar das dificuldades que a doença os impõe. Apesar de tentarem se adaptar aceitando a doença, por vezes os pacientes sentem-se frustrados quando ocorre infecção nas feridas, perda de controle do exsudado ou aumento exagerado no número de feridas 15 .…”

Section: Introductionunclassified

Epidermólise bolhosa: foco na assistência de enfermagem

Benício

Carvalho

Santos

et al. 2016

Estima

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RESUMOA epidermólise bolhosa é uma doença hereditária ocasionada por mutações em várias proteínas estruturais da pele, representando um quadro clínico grave, cujos defeitos adquiridos ou congênitos da adesão intraepidérmica ou dermoepidérmica levam à formação de bolhas (vesículas) na pele e nas mucosas, podendo ser espontâneas ou provocadas por trauma mínimo. Objetivou-se neste estudo identificar, por meio da literatura científica, temas importantes relacionados à assistência de enfermagem frente ao paciente com epidermólise bolhosa. Tratou-se de uma revisão integrativa de literatura com pesquisa realizada nas bases de dados MEDLINE (via PubMed) e PubMed Central Canada (PMC Canada). Oito artigos científicos compuseram a amostra deste estudo. Foi evidenciado um ambiente sofrível tanto para o paciente como para o enfermeiro durante o tratamento, bem como foram encontradas dificuldades pelo paciente em dispor de curativos e coberturas eficientes para as feridas. O impacto da epidermólise no ambiente psicossocial também foi destacado, com enfoque para o tempo gasto na troca de curativos. Concluiu-se que a enfermagem desempenha um papel relevante no tratamento do paciente com epidermólise bolhosa, haja vista as condições que tal sujeito enfrenta e o potencial do enfermeiro para efetuar cuidados paliativos. DESCRITORES:Estomaterapia. Epidermólise bolhosa. Assistência à saúde. Enfermagem. ABSTRACTEpidermolysis bullosa is an inherited disease caused by mutations in several structural proteins of the skin. It represents a serious medical condition. The acquired or congenital defects of the intra-epidermal or dermal-epidermal adhesion lead to the formation of blisters (vesicles) on the skin and on mucous membranes. In fact, this process may be spontaneous or provoked by minimal trauma. The objective of this study was to identify, using scientific evidence, the major issues related to nursing care towards the patient with epidermolysis bullosa. This study was an integrative literature review that was conducted on MEDLINE (via PubMed) and PubMed Central Canada (PMC Canada). Eight scientific articles were selected to be the sample of this study. A painful environment for both the patient and the nurse during the treatment was evidenced. In addition, some difficulties were seen when the patients were trying to find effective covers and dressings for wounds. In addition, the impact of epidermolysis on the psychosocial environment was also highlighted with emphasis on the time spent on dressing changes. Thus, considering the conditions that the patient faces during the treatment and the potential of nurses to implement a palliative care, nursing professionals play an important role in the treatment of patients with epidermolysis bullosa. DESCRIPTORS:Stomatherapy. Epidermolysis bullosa. Delivery of health care. Nursing.

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The psychosocial impact of chronic wounds on patients with severe epidermolysis bullosa

Abstract: There were no external sources of funding for this study.The authors have no conflicts of interest to declare.

Cited by 23 publications

References 35 publications

Survey of patients of the Tver region of Russia regarding maggots and maggot therapy

Survey of patients of the Tver region of Russia regarding maggots and maggot therapy

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

Epidermólise bolhosa: foco na assistência de enfermagem

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