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Psychosocial issues in erythropoietic protoporphyria - the perspective of parents, children, and young adults: A qualitative study

Naik, Hetanshi ; Shenbagam, Shruti ; Go, Allysa Marie ; Balwani, Manisha

Molecular genetics and metabolism, 2019-11, Vol.128 (3), p.314-319 [Periódico revisado por pares]

United States: Elsevier Inc

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  • Título:
    Psychosocial issues in erythropoietic protoporphyria - the perspective of parents, children, and young adults: A qualitative study
  • Autor: Naik, Hetanshi ; Shenbagam, Shruti ; Go, Allysa Marie ; Balwani, Manisha
  • Assuntos: Adult ; Child ; Counseling ; Dermatitis, Phototoxic - etiology ; Dermatitis, Phototoxic - psychology ; EPP ; Erythropoietic protoporphyria ; Family - psychology ; Female ; Focus Groups ; Humans ; Longitudinal Studies ; Male ; Middle Aged ; Parents - psychology ; Protoporphyria, Erythropoietic - psychology ; Protoporphyria, Erythropoietic - therapy ; Psychosocial experiences ; Qualitative Research ; Quality of Life ; Social Behavior ; Young Adult
  • É parte de: Molecular genetics and metabolism, 2019-11, Vol.128 (3), p.314-319
  • Notas: ObjectType-Article-2
    SourceType-Scholarly Journals-1
    ObjectType-Undefined-1
    ObjectType-Feature-3
    content type line 23
    HN, SS & AG- Analysis and interpretation of data
    HN & MB - Drafting/revising the article
    AUTHOR CONTRIBUTIONS
    HN, SS, AG & MB - Conception and design
    Co-Author emails: manisha.balwani@mssm.edu, shrutishenbagam1020@gmail.com, amarie.go@gmail.com
  • Descrição: Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced by patients and families. To address this, an online focus group study was conducted to explore the perspective of parents of children with EPP, and young adults and children with EPP. Five focus groups were conducted in a semi-structured format, with moderator-led discussions exploring the impact on QoL. Three focus groups included parents of children with EPP, one with children aged 10–11 years, and another with young adults aged 24–25 years, for a total of 24 participants. Thematic data analysis showed that parents experience guilt for being unable to protect their children and frustration with the current state of knowledge of EPP. Parents also admitted that the disease can lead to stress within family members which is difficult to manage. Young adults expressed embarrassment over having to explain the disease to others. They reported that the teenage years were the most difficult to navigate; however, they learned to adapt to their disease as they grew older. Children expressed that they had limited understanding of their disease and wished they were told what symptoms to expect by physicians earlier in life. Our findings emphasize the significant impact on QoL for these families and a lack of age appropriate information for children with EPP. These findings can help improve counseling and support resources for patients and caregivers.
  • Editor: United States: Elsevier Inc
  • Idioma: Inglês
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  • Realização: ABCD-USP USP   Logos de Redes Sociais: Freepik

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