on the positive side it’s changed my view of life, I’m much more kind of, I appreciate him, I appreciate every, every second of his life and um much more and I’m much more in wonder I think of him. So I think there are real positives. And I couldn’t love him any more, because you just love them so much because you want them to be well and you know you want them to, yeah I mean it’s a real kind of protective instinct that takes over, but it’s got a real positive side, I think if you want it to it can have a real positive side to it (mother 18)
Acknowledgements
We thank the patients and their families for participating in the study. Our thanks are also extended to PCD centres who recruited parents of young children diagnosed with PCD and the PCD Support Group UK who advertised this study on their social media. We like to thank Lynn Reeves and Samantha Packham for their support to the project management and administration of this research.
Declarations
Ethical approval
Ethical approval for the work presented in this manuscript was obtained from Southampton and South West Hants Research Ethics Committee (REC - 06/Q1702/109; with University of Southampton (ERGO#53155).S Approval was also obtained in United States of America from the University of North Carolina Internal Review Board (IRB#09-1099), and in Canada from Hospital for Sick Children Research Ethics Board (REB#1000024263).
The work has therefore been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments.
Consent for publication
Written consent from all individuals participating in this study has been obtained.
Competing interest
On behalf of all authors, the corresponding author states that there are no competing interests to declare.
Funding Statement
This study/project is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme (NIHR 200470). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The UK National PCD Service is commissioned and funded by NHS England. PCD research in Southampton is supported by NIHR Southampton Respiratory Biomedical Research Unit and NIHR Wellcome Trust Clinical Research Facility.
Author Contributions
JSL and LB conceived and designed the study, secured funding and co-lead the governance of the study. CD developed the interview guide with LB and JSL, and led data collection, analysis, and drafting of this manuscript. LB assisted in data collection and analysis. RK provided qualitative research expertise. WW AH JSL SC SD MS ML KS LS ER MN provided guidance on clinical/demographic data collection forms, recruited the participants and provided clinical data. FC, LD, and EC supported participant recruited and guided the study with their lived experiences. BF, MT, and NT provided guidance on clinical/demographic data collection forms and guided the study with their lived experiences. All authors contributed in writing this paper and approved the final version.
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Table 1: Child characteristics