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Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study
The present study was investigate parents' experiences of children with Epidermolysis bullosa. So, this descriptive phenomenological qualitative study was conducted on 17 parents of children with EB from five hospitals affiliated with the University of Medical Sciences, west of Iran. Data was c...
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| Published in: | BMC research notes 2024-10, Vol.17 (1), p.302-8, Article 302 |
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| creator | Mohammadi, Fateme Masoumi, Seyedeh Zahra Oshvandi, Khodayar Sobhan, Mohammad Raza Bijani, Mostafa |
| description | The present study was investigate parents' experiences of children with Epidermolysis bullosa. So, this descriptive phenomenological qualitative study was conducted on 17 parents of children with EB from five hospitals affiliated with the University of Medical Sciences, west of Iran. Data was collected through semi-structured interviews. COLAIZZI's method was also used to analyze the data.
Three main themes were extracted in this study: invasion of psychological crisis, alive but no living, and comprehensive support, including 10 categories. The parents of these children are the target of psychological crises that severely reduce their quality of life. In this regard, they need extensive support to improve their living conditions. Therefore, it is suggested to provide cultural and institutional contexts in which all components of the children's dignity are emphasized. |
| doi_str_mv | 10.1186/s13104-024-06968-5 |
| format | article |
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Three main themes were extracted in this study: invasion of psychological crisis, alive but no living, and comprehensive support, including 10 categories. The parents of these children are the target of psychological crises that severely reduce their quality of life. In this regard, they need extensive support to improve their living conditions. Therefore, it is suggested to provide cultural and institutional contexts in which all components of the children's dignity are emphasized.</description><identifier>ISSN: 1756-0500</identifier><identifier>EISSN: 1756-0500</identifier><identifier>DOI: 10.1186/s13104-024-06968-5</identifier><identifier>PMID: 39390602</identifier><language>eng</language><publisher>England: BioMed Central Ltd</publisher><subject>Adolescent ; Adult ; Analysis ; Beliefs, opinions and attitudes ; Care and treatment ; Care of the sick ; Caregivers - psychology ; Caring ; Challenge ; Child ; Child, Preschool ; Children ; Diseases ; Epidermolysis bullosa ; Epidermolysis Bullosa - psychology ; Epidermolysis Bullosa - therapy ; Female ; Humans ; Iran ; Male ; Middle Aged ; Parents ; Parents - psychology ; Perception ; Psychological aspects ; Qualitative Research ; Qualitative study ; Quality of Life - psychology ; Social aspects</subject><ispartof>BMC research notes, 2024-10, Vol.17 (1), p.302-8, Article 302</ispartof><rights>2024. The Author(s).</rights><rights>COPYRIGHT 2024 BioMed Central Ltd.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c395t-4efd4d6f927b5676257418d3e9a1a9d8bf364cd353672a9a587d82939d5ee6083</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925,37013</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39390602$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Mohammadi, Fateme</creatorcontrib><creatorcontrib>Masoumi, Seyedeh Zahra</creatorcontrib><creatorcontrib>Oshvandi, Khodayar</creatorcontrib><creatorcontrib>Sobhan, Mohammad Raza</creatorcontrib><creatorcontrib>Bijani, Mostafa</creatorcontrib><title>Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study</title><title>BMC research notes</title><addtitle>BMC Res Notes</addtitle><description>The present study was investigate parents' experiences of children with Epidermolysis bullosa. So, this descriptive phenomenological qualitative study was conducted on 17 parents of children with EB from five hospitals affiliated with the University of Medical Sciences, west of Iran. Data was collected through semi-structured interviews. COLAIZZI's method was also used to analyze the data.
Three main themes were extracted in this study: invasion of psychological crisis, alive but no living, and comprehensive support, including 10 categories. The parents of these children are the target of psychological crises that severely reduce their quality of life. In this regard, they need extensive support to improve their living conditions. 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So, this descriptive phenomenological qualitative study was conducted on 17 parents of children with EB from five hospitals affiliated with the University of Medical Sciences, west of Iran. Data was collected through semi-structured interviews. COLAIZZI's method was also used to analyze the data.
Three main themes were extracted in this study: invasion of psychological crisis, alive but no living, and comprehensive support, including 10 categories. The parents of these children are the target of psychological crises that severely reduce their quality of life. In this regard, they need extensive support to improve their living conditions. Therefore, it is suggested to provide cultural and institutional contexts in which all components of the children's dignity are emphasized.</abstract><cop>England</cop><pub>BioMed Central Ltd</pub><pmid>39390602</pmid><doi>10.1186/s13104-024-06968-5</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record> |
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| source | PubMed Central (Open Access); Publicly Available Content (ProQuest) |
| subjects | Adolescent Adult Analysis Beliefs, opinions and attitudes Care and treatment Care of the sick Caregivers - psychology Caring Challenge Child Child, Preschool Children Diseases Epidermolysis bullosa Epidermolysis Bullosa - psychology Epidermolysis Bullosa - therapy Female Humans Iran Male Middle Aged Parents Parents - psychology Perception Psychological aspects Qualitative Research Qualitative study Quality of Life - psychology Social aspects |
| title | Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study |
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