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Participants were recruited using non\u2010probabilistic purposeful sampling. In total, 32 parents with children with PMS were included. In\u2010depth interviews and researcher field notes were used. An inductive thematic analysis was performed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Five themes were identified: (1) the \u2018diagnostic process\u2019 describes the diagnostic process and how it is communicated to the parents; (2) \u2018treatment and expectations\u2019 describes the expectations and hopes placed on future treatment; (3) \u2018family planning\u2019 describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) \u2018the world of disability\u2019 describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) \u2018family's financial situation\u2019 highlights the financial difficulties due to the high cost of therapies and daily care products.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec>","DOI":"10.1111\/dmcn.15485","type":"journal-article","created":{"date-parts":[[2022,12,4]],"date-time":"2022-12-04T14:48:10Z","timestamp":1670165290000},"page":"908-916","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Experiences surrounding the diagnostic process and care among parents of children diagnosed with Phelan\u2013<scp>McDermid<\/scp> syndrome: A qualitative study"],"prefix":"10.1111","volume":"65","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6437-6758","authenticated-orcid":false,"given":"Cristina","family":"Garc\u00eda\u2010Bravo","sequence":"first","affiliation":[{"name":"Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group in Evaluation and Assessment of Capacity, Functionality and Disability of Universidad Rey Juan Carlos (TO+IDI) 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