Academic Journal
Experiences surrounding the diagnostic process and care among parents of children diagnosed with Phelan– McDermid syndrome: A qualitative study
| العنوان: | Experiences surrounding the diagnostic process and care among parents of children diagnosed with Phelan– McDermid syndrome: A qualitative study |
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| المؤلفون: | García‐Bravo, Cristina, Martínez‐Piédrola, Rosa M, García‐Bravo, Sara, Huertas‐Hoyas, Elisabet, Pérez‐De‐Heredia‐Torres, Marta, Palacios‐Ceña, Domingo |
| المصدر: | Developmental Medicine & Child Neurology ; volume 65, issue 7, page 908-916 ; ISSN 0012-1622 1469-8749 |
| بيانات النشر: | Wiley |
| سنة النشر: | 2022 |
| المجموعة: | Wiley Online Library (Open Access Articles via Crossref) |
| الوصف: | Aim To explore the experience of parents of children diagnosed with Phelan–McDermid syndrome (PMS) with regard to the diagnostic process, treatment, and medical care. Method A qualitative descriptive study was conducted. Participants were recruited using non‐probabilistic purposeful sampling. In total, 32 parents with children with PMS were included. In‐depth interviews and researcher field notes were used. An inductive thematic analysis was performed. Results Five themes were identified: (1) the ‘diagnostic process’ describes the diagnostic process and how it is communicated to the parents; (2) ‘treatment and expectations’ describes the expectations and hopes placed on future treatment; (3) ‘family planning’ describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) ‘the world of disability’ describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) ‘family's financial situation’ highlights the financial difficulties due to the high cost of therapies and daily care products. Interpretation Our results provide insight on how a diagnosis of PMS and its consequences are experienced by parents of children with PMS. These results can be used by health professionals to help and support parents. |
| نوع الوثيقة: | article in journal/newspaper |
| اللغة: | English |
| DOI: | 10.1111/dmcn.15485 |
| الاتاحة: | http://dx.doi.org/10.1111/dmcn.15485 https://onlinelibrary.wiley.com/doi/pdf/10.1111/dmcn.15485 https://onlinelibrary.wiley.com/doi/full-xml/10.1111/dmcn.15485 |
| Rights: | http://onlinelibrary.wiley.com/termsAndConditions#vor |
| رقم الانضمام: | edsbas.8C25AFE2 |
| قاعدة البيانات: | BASE |
| DOI: | 10.1111/dmcn.15485 |
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