{
  "abstract": "Background Primary Ciliary Dyskinesia (PCD) is a chronic condition that causes reduced mucociliary clearance and mainly affects the respiratory system. PCD currently has no cure and is managed by daily chest physiotherapy and frequent hospital appointments with varying specialties. Paediatric patients are often fully supported by a parent or caregiver which can have significant impacts on parents’ lives primarily in the psychosocial and physical wellbeing domains.Aims To explore parents’ experiences of having children with PCD focusing on coping mechanisms, parental adaptation and barriers to copingMethods I performed secondary data analysis on anonymised transcripts (N=26) of interviews exploring parental quality of life of having children with PCD and coded that data using NVivo. I followed this with inductive reflexive thematic analysis to analyse the impact the diagnosis had on parents’ lives and the function of the different coping mechanisms that were utilised.Results Three key themes were identified: parents’ adapting narratives, facilitators of coping and barriers to coping. All parents recognised that upon experiencing uncertainty, the formation of a routine was essential to coping and accepting the condition as a part of life. Majority of parents acknowledged the idea of teamwork being a fundamental factor in sharing the burden associated with caring for their child and creating a reliable support network. Parents also responded to their child’s diagnosis with hypervigilance consisting of meticulous monitoring and striving for mastery of condition.Conclusion Reducing perceived treatment burden and enabling self-efficacy were factors associated with improved parental adaptation and had facilitated coping. Collaborative approaches to managing care by relying on teamwork with partners and healthcare professionals were shown to reduce anxiety and was a sustainable coping strategy. Parents acknowledging their stressors and managing their anxiety could help improve affected parental mental health since this was identified as a key barrier to coping.",
  "authors": [
    {
      "affiliations": [
        "University of Southampton, Southampton, UK"
      ],
      "name": "S Suran"
    },
    {
      "affiliations": [
        "University of Southampton, Southampton, UK"
      ],
      "name": "J Lucas"
    },
    {
      "affiliations": [
        "University of Southampton, Southampton, UK"
      ],
      "name": "S Punton"
    },
    {
      "affiliations": [
        "University of Southampton, Southampton, UK"
      ],
      "name": "K Dexter"
    }
  ],
  "title": "P137 Exploring parental experiences and coping with having children with primary ciliary dyskinesia: a qualitative secondary data analysis",
  "uid": "af869211-b560-5262-9c9a-c88ebe2a9cfe"
}