Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study

作者：Marie‐Anastasie Aim, Marie‐Christine Rousseau, Ilyes Hamouda, Any Beltran Anzola, Thierry Billette de Villemeur, Mathieu Milh, Kim Maincent, Katia Lind, Pascal Auquier, Karine Baumstarck, Lionel Dany · 发表于：Health Expectations · 年份：2023 · DOI：10.1111/hex.13910 · 被引用次数：12 · 研究领域：Family and Disability Support Research、Disability Rights and Representation、Down syndrome and intellectual disability research

INTRODUCTION: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. OBJECTIVE: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context. METHOD: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis. RESULTS: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities. CONCLUSION: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors ...