Experiences of mothers in the care of children and adolescents with epidermolysis bullosa
Experiencias de madres en el cuidado de niños y adolescentes con Epidermólisis Ampollosa
Vivências de mães no cuidado a crianças e adolescentes com Epidermólise Bolhosa
Carolina Balestra Silva; Aline Cristiane Cavicchioli Okido; Diene Monique Carlos; Monika Wernet; Nayara Gonçalves Barbosa
Abstract
Objective: to know and analyze mothers’ experiences in caring for children and adolescents with Epidermolysis Bullosa.
Method: a descriptive qualitative study was developed with ten mothers of children and adolescents with epidermolysis bullosa from different regions of Brazil using semi-structured interviews recorded remotely using Google Meet® between September and November 2021. The thematic analysis technique guided the appreciation of the empirical material.
Results: mothers aged between 23 and 53 years participated in the study. Two categories translate the maternal experience: i) the “shock” of the diagnosis and the initial challenges and ii) “Stop living to live for them”: the changes in the families’ daily life.
Final considerations and implications for practice: mothers experienced fear and insecurity when their child was diagnosed, and the care routine, especially the daily dressing changes, caused a physical and emotional burden. These results can support the follow-up of these families to provide them with care tools and emotional support.
Keywords
Resumen
Palabras clave
Resumo
Objetivo: conhecer e analisar as vivências de mães no cuidado a crianças e adolescentes com Epidermólise Bolhosa.
Método: estudo descritivo de abordagem qualitativa desenvolvido junto a dez mães de crianças e adolescentes com Epidermólise Bolhosa de diferentes regiões do Brasil, a partir de entrevistas semiestruturadas, áudio e vídeo gravadas, por via remota, utilizando-se a plataforma Google Meet®, entre setembro e novembro de 2021. A técnica da análise temática direcionou a apreciação do material empírico.
Resultados: participaram do estudo mães com idade entre 23 e 53 anos. Duas categorias traduzem a vivência materna: i) O “baque” do diagnóstico e os desafios iniciais e ii) “Deixar de viver para viver para ele”: as mudanças no cotidiano das famílias.
Considerações finais e implicações para a prática: as mães vivenciaram sentimentos de medo e insegurança diante do diagnóstico do filho e a rotina de cuidados, em especial, as trocas diárias de curativos, acarretaram sobrecarga física e emocional. Esses resultados podem subsidiar o acompanhamento dessas famílias de modo a instrumentalizá-las para o cuidado e apoiá-las emocionalmente.
Palavras-chave
Referências
1 Secco IL, Costa T, Moraes ELL, Freire MHS, Danski MTR, Oliveira DAS. Cuidados de enfermagem a neonato com epidermólise bolhosa: relato de caso. Rev Esc Enferm USP. 2019;53:e03501.
2 Bardhan A, Bruckner-Tuderman L, Chapple ILC, Fine JD, Harper N, Has C et al. Epidermolysis bullosa. Nat Rev Dis Primers. 2020;6(1):78.
3 Fine JD. Epidemiology of inherited epidermolysis bullosa based on incidence and prevalence estimates from the national epidermolysis bullosa registry. JAMA Dermatol. 2016;152(11):1231-8.
4 Silva RA, Souza SPS, Bernardino FBS, Alencastro LCS. Cuidado familiar à criança e ao adolescente com epidermólise bolhosa: uma revisão integrativa da literatura. Rev Baiana Enferm. 2020;34:e35781.
5 Kearney S, Donohoe A, McAuliffe E. Living with epidermolysis bullosa: Daily challenges and health-care needs. Health Expect. 2020;23(2):368-76.
6 Mauritz P, Jonkman MF, Visser SS, Finkenauer C, Duipmans JC, Hagedoorn M. Impact of painful wound care in Epidermolysis Bullosa during childhood: an interview study with adult patients and parents. Acta Derm Venereol. 2019;99(9):783-8.
7 Chogani F, Parvizi MM, Murrell DF, Handjani F. Assessing the quality of life in the families of patients with epidermolysis bullosa: the mothers as main caregivers. Int J Womens Dermatol. 2021;7(5):721-6.
8 Ireland CJ, Pelentsov LJ, Kopecki Z. Caring for a child with Epidermolysis Bullosa: a scoping review on the family impacts and support needs. Wound Pract Res. 2021;29(2):86-97.
9 Flick U. Introdução à pesquisa qualitativa. 3ª ed. Porto Alegre: Artmed; 2009.
10 Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2011. 229 p.
11 Chateau AV, Blackbeard D, Aldous C. The impact of epidermolysis bullosa on the family and healthcare practitioners: a scoping review. Int J Dermatol. 2022. No prelo.
12 Bruckner AL, Losow M, Wisk J, Patel N, Reha A, Lagast H et al. The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers. Orphanet J Rare Dis. 2020;15(1):1.
13 Kahraman S, Çiftçi EK, Timuçin A. Determination of caregiving burden of parentsproviding care to their children with epidermolysis bullosa. Egypt J Dermatol Venerol. 2017;37(1):1-6.
14 Angelis A, Kanavos P, López-Bastida J, Linertová R, Oliva-Moreno J, Serrano-Aguilar P et al. Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. Eur J Health Econ. 2016;17(Supl. 1):31-42.
15 Wu YH, Sun FK, Lee PY. Family caregivers’ lived experiences of caring for epidermolysis bullosa patients: a phenomenological study. J Clin Nurs. 2020;29(9-10):1552-60.
16 Silva RA, Santos RES, Alencastro LCS, Mocheuti KN, Pinheiro TF, Bernardino FBS. A vivência do cuidado materno a uma lactente com epidermólise bolhosa. Rev Enferm Cent Oeste Min. 2020;10:e4133.
17 Martin K, Geuens S, Asche JK, Bodan R, Browne F, Downe A et al. Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines. Orphanet J Rare Dis. 2019;14(1):133.
18 Mauritz PJ, Bolling M, Duipmans JC, Hagedoorn M. Patients’ and parents’ experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study. Orphanet J Rare Dis. 2022;17(1):313.
19 Frizzo HCF, Bousso RS, Ichikawa CRF, Sá NN. Mães enlutadas: criação de blogs temáticos sobre a perda de um filho. Acta Paul Enferm. 2017;30(2):116-21.
Submetido em:
28/06/2022
Aceito em:
26/09/2022
Facebook
Google+
Twitter
LinkedIn
Mendeley
StumbleUpon
CiteULike
Reddit
Email