The experience of albinism in France: a qualitative study on dyads of parents and their adult child with albinism

被引：0
|
作者：
Hugo Fournier
Marie Hasdenteufel
Constance Garrouteigt
Mathieu Perie
Antoine Gliksohn
Béatrice Jouanne
Smail Hadj-Rabia
Benoit Arveiler
Fanny Morice-Picard
Bruno Quintard
机构：
[1] University of Bordeaux,Laboratory of Psychology (LabPsy) UR 4139
[2] National Institute for Research in Digital Science and Technology,Laboratory of Rare Diseases: Genetics and Metabolism (MRGM) INSERM U1211
[3] Genespoir Association,undefined
[4] Global Albinism Alliance,undefined
[5] APHP Paris Necker-Enfants Malades,undefined
[6] CHU Bordeaux,undefined
[7] University of Bordeaux,undefined
来源：
BMC Medicine | / 22卷
关键词：
Albinism; Rare diseases; Dyadic functioning; Disability adjustment; Visual impairment; Daily life; Systemic approach; Qualitative research;
D O I：
暂无
中图分类号：
学科分类号：
摘要：
引用
收藏
相关论文
共 50 条
  • [41] The experience of adoptive parents in adoption reunion relationships: A qualitative study
    Petta, GA
    Steed, LG
    AMERICAN JOURNAL OF ORTHOPSYCHIATRY, 2005, 75 (02) : 230 - 241
  • [42] Parents' experience of extended viewing in a paediatric hospice: a qualitative study
    Smith, Philippa
    Teasdale, Elizabeth
    Sheppard-Law, Suzanne
    INTERNATIONAL JOURNAL OF PALLIATIVE NURSING, 2023, 29 (01) : 34 - 42
  • [43] A qualitative study of experience of parents of adolescents who received ECT
    Grover, Sandeep
    Varadharajan, Natarajan
    Avasthi, Ajit
    ASIAN JOURNAL OF PSYCHIATRY, 2017, 30 : 109 - 113
  • [44] Parents’ pandemic NICU experience in the United States: a qualitative study
    Ashlee J. Vance
    Kathryn J. Malin
    Jacquelyn Miller
    Clayton J. Shuman
    Tiffany A. Moore
    Annella Benjamin
    BMC Pediatrics, 21
  • [45] Parents' pandemic NICU experience in the United States: a qualitative study
    Vance, Ashlee J.
    Malin, Kathryn J.
    Miller, Jacquelyn
    Shuman, Clayton J.
    Moore, Tiffany A.
    Benjamin, Annella
    BMC PEDIATRICS, 2021, 21 (01)
  • [46] Parents' Experience of Pediatric Home Care: A Qualitative Exploratory Study
    Salome, Laure
    Martin, Jeremy
    Baussant-Crenn, Camille
    Flahault, Cecile
    PSYCHO-ONCOLOGIE, 2024, 18 (02) : 137 - 146
  • [47] Qualitative analysis of parents' experience with receiving the news of the detection of their child's hearing loss
    Gilbey, Peter
    INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY, 2010, 74 (03) : 265 - 270
  • [48] Parental experience of child protection intervention: A qualitative study
    Dumbrill, GC
    CHILD ABUSE & NEGLECT, 2006, 30 (01) : 27 - 37
  • [49] Lived experience of having a child with stroke: A qualitative study
    Soufi, Syrine
    Chabrier, Stephane
    Bertoletti, Laurent
    Laporte, Silvy
    Darteyre, Stephane
    EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY, 2017, 21 (03) : 542 - 548
  • [50] The second shock: A qualitative study of parents' perspectives and needs during their child's transition from school to adult life
    HanleyMaxwell, C
    WhitneyThomas, J
    Pogoloff, SM
    JOURNAL OF THE ASSOCIATION FOR PERSONS WITH SEVERE HANDICAPS, 1995, 20 (01): : 3 - 15
12345