Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study.
Background: Epidermolysis bullosa (EB) is a rare, inherited disease characterized by mucocutaneous fragility. It requires continuous family support and caregiving. However, insights into the complex realities of daily caregiving roles for parents remain limited. This study aimed to explore the lived...
| Publicado en: | International Journal of Community Based Nursing & Midwifery Vol. 13; no. 2; pp. 149 - 161 |
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| Autores principales: | , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Shiraz University of Medical Sciences
Apr2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=185517300&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 185517300 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 23224835 HBS5 jtl: International Journal of Community Based Nursing & Midwifery issn: 23224835 maglogo: N pubinfo: dt: Apr2025 vid: 13 iid: 2 pid: 65846 pub: Shiraz University of Medical Sciences place: Shiraz, <Blank> artinfo: ui: 185517300 185517300 185517300 10.30476/ijcbnm.2025.102011.2466. 185517300 ppf: 149 ppct: 12 formats: fmt: @attributes: type: P tig: atl: Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study. aug: au: Khalili, Hassan Moonaghi, Hossein Karimi Kianifar, Hamid Reza Manzari, Zahra Sadat affil: Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran sug: subj: Epidermolysis Bullosa Psychosocial Factors Parental Attitudes Caregiver Attitudes Life Experiences Evaluation Iranians Psychosocial Factors Caring In Infancy and Childhood Human Qualitative Studies Phenomenological Research Iran Child Male Female Semi-Structured Interview Thematic Analysis Child Rearing Confusion Epidermolysis Bullosa Therapy Stress, Psychological Social Isolation Quality of Life Child, Preschool Adolescence Adult Middle Age Hope Frustration Funding Source Child: 6-12 years Child, Preschool: 2-5 years Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Male Female ab: Background: Epidermolysis bullosa (EB) is a rare, inherited disease characterized by mucocutaneous fragility. It requires continuous family support and caregiving. However, insights into the complex realities of daily caregiving roles for parents remain limited. This study aimed to explore the lived experiences of Iranian family caregivers caring for their children with EB. Methods: This phenomenological study was carried out from February to November 2023 at Mashhad Akbar Hospital or participants' homes. Purposeful maximum variation sampling was used to recruit 10 parents (3 fathers, 7 mothers) who met the inclusion criteria. Data were gathered through in-person, semi-structured interviews and analyzed using Van Manen method in MAXQDA software version 2020. Results: Caregivers' experiences elucidate the profound adversity endured by parents raising children with EB. Four themes emerged from the data: "lost and confused about care and treatment"; "trapped in endless cycle of hardship caring"; "inevitable self-isolation"; and "bitter and deteriorating family life". Conclusion: Family caregivers who provide care for children with EB face numerous difficulties, leading to significant stress and heavy responsibilities. Their lived experiences provide a comprehensive picture of the physical, psychological, and social difficulties related to this rare disease. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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