The Psychosocial Impact of Epidermolysis Bullosa

Dures, Emma; Morris, Marianne; Gleeson, Kate; Rumsey, Nichola

doi:10.1177/1049732311400431

Cited by 68 publications

(119 citation statements)

References 42 publications

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“…A relatively small number of studies relate to the psychological aspects of living with the disease [2][3][4]. Appreciating the value of medical research, it is worth noting that the progress in therapy is a distant matter whereas people suffering from EB and their families encounter their difficulties now; therefore, it is important to pay attention to their psychical well-being as well.…”

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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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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“…This type of epidermolysis leaves no scars or causes dental changes [1]. Already in junctional EB, cleavage is located in subepidermal Junction, in the lamina lucida [4], producing severe events occurring anemia, growth retardation, hyperkeratosis foot plant, which can be fatal [1].…”

Section: Discussionmentioning

confidence: 99%

“…EB simplex is the most common form (92%), followed by dystrophic EB (5%) and finally the junctional EB (1%). An American study suggested that for every 350 people, one carries a recessive gene for EB congenital [4].…”

Section: Introductionmentioning

confidence: 99%

Oral rehabilitation noninvasive in a patient with junctional epidermolysis bullosa: Case report

Okayama¹,

Miyazaki²,

Filho³

et al. 2015

Dent Oral Craniofac Res

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Epidermolysis bullosa occurs in all races worldwide and not differ on incidence between the genders. It is a very rare disease and its occurrence in the population is not known precisely, but it is estimated that the prevalence of dystrophic form is between one case in every 20,000 to 130,000 people and the way acquired a case for 1.3 million people. According to epidemiological data from the United States, there are 50 cases of epidermolysis bullosa 1,000,000 live births. The present study is an attempt to rehabilitate the patient's dentition in question through two hybrid dentures supported on the teeth using a non-invasive treatment and in an efficient manner. Case Report, CF patient, 42 years old, male, white, attended the clinic specialized in prosthodontics University Center North Paulista (UNORP) due to their need for oral rehabilitation. In discussion, by treating able to improve masticatory function, besides the same show already be accustomed to the use of hearing aids without appearance of lesions or blisters and very satisfied with the aesthetic result, increasing their self-esteem. In conclusion, the rehabilitation by means of two hybrid supported denture on teeth has been successfully performed via a non-invasive and efficient treatment.

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“…The literature mentions that school children are increasingly conscious of physical differences in relation to their peers. If these perceptions are accompanied by unpleasant comments or mockery, they can make the child feel inferior or undesirable (22,30) …”

Section: Discussionmentioning

confidence: 99%

Living with pain: the experience of children and adolescents in palliative care

Borghi

Rossato

Damião

et al. 2014

Rev. esc. enferm. USP

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El estudio tuvo como objetivo conocer la experiencia de niños y adolescentes en cuidados paliativos en el manejo diario del dolor. La investigación cualitativa fue realizada con entrevistas semi-estructuradas con seis niños entre siete y 17 años. La teoría del Desarrollo cognitivo de Piaget fue utilizada como Marco teórico y la Historia Oral como Referencial Metodológico. Cuatro temas fueron encontrados: describiendo el dolor; buscando una vida más próxima de la normalidad, a pesar del dolor y la enfermedad; utilizando varias alternativas para el control del dolor y viviendo la autoimagen perjudicada. A pesar del dolor ser un agente limitante en la vida de los niños y adolescentes, verificamos que enfrentaban el dolor diariamente y, que así mismo, tenían vida además del dolor y la enfermedad. Adicionamos, aun, la importancia de los enfermeros comprender que el eficaz manejo del dolor es esencial para una vida mas próxima de la normalidad, reduciendo su sufrimiento. DESCRIPTORES ABSTRACTA qualitative study was conducted with semi-structured interviews with the aim of understanding the experience of children and adolescents under palliative care when managing pain daily and how they describe the intensity, quality and location of pain. We used Piaget's theory of cognitive development as a theoretical framework and oral history as a methodological framework. We found four themes: describing pain; seeking a life closer to normality, despite pain and disease; using a variety of alternatives for pain control; and living with damaged physical appearance. Although pain is a limiting factor in the lives of children and adolescents, we found that they faced their daily pain and still had a life beyond pain and illness. In addition, we highlight the relevance of nurses' understanding that effective management of pain in children is essential for a normal life and less suffering.

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The Psychosocial Impact of Epidermolysis Bullosa

Cited by 68 publications

References 42 publications

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

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

Oral rehabilitation noninvasive in a patient with junctional epidermolysis bullosa: Case report

Living with pain: the experience of children and adolescents in palliative care

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