Modos de tecitura de redes para o cuidado pela família que vivencia a condição crônica por adrenoleucodistrofia

Nepomuceno, Marly Akemi Shiroma; Bellato, Roseney; Araújo, Laura Filomena Santos de; Mufato, Leandro Felipe

doi:10.4025/cienccuidsaude.v11i1.18872

Cited by 4 publications

(16 citation statements)

References 8 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…For the overall quality score, none of the remaining 11 studies met all of the appraisal criteria. One study met 9 criteria, 18 1 study met 8 criteria, 17 6 studies met 7 criteria, 13 , 16 , 19 , 30 , 32 , 33 2 studies met 6 criteria, 31 , 34 and 1 study met 3 criteria. 20 All studies met the criteria for Q8, Q9, and Q10.…”

Section: Resultsmentioning

confidence: 99%

“…Studies included those conducted in a single country or region as well as those conducted across multiple countries. Of the studies conducted in a single country, 3 were conducted in the United States, 16 , 19 , 30 2 in Brazil, 32 , 34 2 in Taiwan, 17 , 18 and 1 in Australia. 20 In studies conducted in multiple countries, 1 study was conducted in the United States, France, Germany, and Colombia 13 ; 1 study in the United States, France, Germany, and the United Kingdom 31 ; and 1 study in the United Kingdom and Republic of Ireland.…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Experiences of patients with metachromatic leukodystrophy, adrenoleukodystrophy, or Krabbe disease and the experiences of their family members: a qualitative systematic review

Koto,

Ueki,

Yamakawa

et al. 2024

JBI Evidence Synthesis

View full text Add to dashboard Cite

Objective: This review aimed to synthesize the experiences of patients with metachromatic leukodystrophy, adrenoleukodystrophy, or Krabbe disease and those of their families. Introduction: Leukodystrophies are metabolic diseases caused by genetic mutations. There are multiple forms of the disease, varying in age of onset and symptoms. The progression of leukodystrophies worsens central nervous system symptoms and significantly affects the lives of patients and their families. Inclusion criteria: Qualitative studies on the experiences of patients with leukodystrophies and their family members were included. These experiences included treatments such as enzyme replacement therapy and hematopoietic stem cell transplantation; effects of tracheostomy and gastrostomy; burdens on the family, coordinating care within the health care system, and family planning due to genetic disorders. This review considered studies in any setting. Methods: MEDLINE (Ovid), CINAHL Plus (EBSCOhost), APA PsycINFO (EBSCOhost), Scopus, and MedNar databases were searched on November 18, 2022. Study selection, critical appraisal, data extraction, and data synthesis were conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence, and synthesized findings were evaluated according to the ConQual approach. Results: Eleven studies were eligible for synthesis, and 45 findings were extracted corresponding with participants’ voices. Of these findings, 40 were unequivocal and 5 were credible. The diseases in the included studies were metachromatic leukodystrophy and adrenoleukodystrophy; no studies were identified for patients with Krabbe disease and their families. These findings were grouped into 11 categories and integrated into 3 synthesized findings, including i) providing care by family members and health care providers as physical symptoms progress, which relates to effects of the characteristics of progressive leukodystrophies; ii) building medical teamwork to provide appropriate support services, comprising categories related to the challenges experienced with the health care system for patients with leukodystrophy and their families; and iii) coordinating family functions to accept and cope with the disease, which included categories related to family psychological difficulties and role divisions within the family. According to the ConQual criteria, the second synthesized finding had a low confidence level, and the first and third synthesized findings had a very low confidence level. Conclusions: The synthesized findings of this review provide evidence on the experiences of patients with metachromatic leukodystrophy or adrenoleukodystrophy and their families. These findings indicate that there are challenges in managing a patient’s physical condition and coordinating the health care system and family functions. Review Registration PROSPERO CRD42022318805

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Experiences of patients with metachromatic leukodystrophy, adrenoleukodystrophy, or Krabbe disease and the experiences of their family members: a qualitative systematic review

Koto,

Ueki,

Yamakawa

et al. 2024

JBI Evidence Synthesis

View full text Add to dashboard Cite

show abstract

“…Estudo sobre a experiência familiar de cuidado à adolescente com adrenoleucodistrofia já alertava sobre a importância de se considerar o agravamento das necessidades de saúde, visto tratar-se de uma doença degenerativa, de modo que o cuidado oferecido seja progressivamente renovado ao longo do tempo e que os profissionais consigam apoiar as famílias neste cuidado (Nepomuceno et al, 2012).…”

Section: Discussionunclassified

Cuidar na situação de adoecimento raro: vivência da família e sua busca por amparo dos serviços de saúde

2016

Self Cite

View full text Add to dashboard Cite

Resumo Compreender a vivência familiar no cuidado à criança com síndrome rara, bem como, sua busca por amparo dos serviços e profissionais de saúde. Estudo compreensivo desenvolvido junto à família constituída, nuclearmente, por Pedro e Luisa, pais de Theo, que nasceu com síndrome raríssima e neurodegenerativa. As estratégias metodológicas incluíram a História de Vida operacionalizada pela Entrevista em Profundidade e Observação. O campo compreendeu junho de 2015 a janeiro de 2016 e o material empírico foi organizado no Diário de Pesquisa. Realizamos sua leitura atentiva, atribuindo diferenciação por cor aos significados dos trechos narrados. A pesquisa matricial a qual este estudo se vincula tem aprovação ética sob o nº 951.101/CEP-HUJM/2015. Os cuidados oferecidos pela família são preparados com esmero e de modo integrativo, tendo como foco o bem-estar de Theo e o seu desenvolvimento naquilo que lhe é possível. Essa perspectiva integrativa se distancia daquela dos serviços e profissionais de saúde que oferecem respostas estritamente pontuais, direcionadas ao que é demandado em dado momento. Para ampliar a capacidade resolutiva, os serviços/profissionais de saúde precisam pôr em movimento noções diferenciadas de tempo e temporalidade, de maneira a reconsiderar os tempos protocolares e rigidamente formalizados, num esforço de abarcar a temporalidade do viver e do cuidar de crianças com outras normalidades.

show abstract

“…Nessa complexa confluência de fatores que afetam as condições de saúde, faz-se necessário que a pessoa adoecida e sua família busquem outros modos de viver frente às novas necessidades do cotidiano que se instalam, uma vez que a condição crônica afeta não somente a pessoa adoecida, mas todos a sua volta (4) . Nosso interesse por esta temática surge dessa confluência de fatores, pois a condição crônica pode perdurar por um longo período da vida até que seja obtida a cura ou, o que é mais freqüente, permanecer sob controle ao longo de toda a vida, necessitando de novas conformações do cotidiano familiar para seu gerenciamento.…”

Section: Introductionunclassified

<b> Diferentes modos da família cuidar de pessoa idosa em situação crônica / Different forms of family care for elderly in chronic situation <b/>

Corrêa¹,

Bellato²,

Araújo³

2015

Cienc. Cuid. Saúde

Self Cite

View full text Add to dashboard Cite

Modos de tecitura de redes para o cuidado pela família que vivencia a condição crônica por adrenoleucodistrofia

Cited by 4 publications

References 8 publications

Experiences of patients with metachromatic leukodystrophy, adrenoleukodystrophy, or Krabbe disease and the experiences of their family members: a qualitative systematic review

Experiences of patients with metachromatic leukodystrophy, adrenoleukodystrophy, or Krabbe disease and the experiences of their family members: a qualitative systematic review

Cuidar na situação de adoecimento raro: vivência da família e sua busca por amparo dos serviços de saúde

<b> Diferentes modos da família cuidar de pessoa idosa em situação crônica / Different forms of family care for elderly in chronic situation <b/>

Contact Info

Product

Resources

About