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