{
  "abstract": "Objectives To systematically analyse parent-to-parent guidance for those receiving a diagnosis of congenital heart disease (CHD) to inform clinician counselling and advance development of support programmes.Design We asked parents of children who had CHD requiring surgery or catheterisation in infancy about their recommendations for parents receiving a new diagnosis. We analysed responses using mixed methods.Setting Stand-alone children’s hospital.Patients We interviewed 100 parents of children with CHD with a 96% participation rate.Main outcome measures Qualitative themes for primary recommendations and quantitative analysis of correlation between themes and social/clinical factors.Results Parents recommended balancing tactics for taking control with strategies for adapting to uncertainty. Parents recognised the importance of acknowledging challenges (noted by 24%) but focused primarily on imperatives to move forward: (1) empower yourself with information and support (50%), (2) take care of yourself (23%), (3) trust your medical team, your child and yourself (31%) and (4) maintain a positive outlook on improvement and believe that normalcy is possible (42%). Recommendations varied little with social or clinical factors.Conclusions Recommendations from parents provide direct advice for others facing new diagnoses and outline actionable steps for clinicians hoping to support those receiving a CHD diagnosis. Clinicians may acknowledge challenges, help parents reflect on what they can and cannot control and empower parents by providing comprehensible information and connecting them to other parents.",
  "authors": [
    {
      "affiliations": [
        "The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA",
        "Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania, USA"
      ],
      "name": "Katharine Press Callahan"
    },
    {
      "affiliations": [
        "Sharp Mary Birch Hospital for Women and Newborns, San Diego, California, USA"
      ],
      "name": "Rebecca Dorner"
    },
    {
      "affiliations": [
        "CHU Sainte-Justine Département de Pédiatrie, Montreal, Quebec, Canada"
      ],
      "name": "Magdalena Jaworski"
    },
    {
      "affiliations": [
        "Nationwide Children’s Hospital, Columbus, Ohio, USA"
      ],
      "name": "Lauren Capaci"
    },
    {
      "affiliations": [
        "Department of Pediatrics, Université de Montréal, Montreal, Quebec, Canada",
        "Bureau de L’éthique Clinique, Université de Montréal, Montreal, Quebec, Canada"
      ],
      "name": "Annie Janvier"
    },
    {
      "affiliations": [
        "Department of Pediatrics, Université de Montréal, Montreal, Quebec, Canada"
      ],
      "name": "Karolane Maltais"
    },
    {
      "affiliations": [
        "Azrieli Research Center CHU Sainte-Justine, Montreal, Quebec, Canada"
      ],
      "name": "Chloe Barsoum"
    },
    {
      "affiliations": [
        "Parent Representative, CHU Sainte-Justine, Montreal, Quebec, Canada"
      ],
      "name": "Catherine Martin"
    },
    {
      "affiliations": [
        "Nationwide Children’s Hospital, Columbus, Ohio, USA"
      ],
      "name": "Carl H Backes"
    },
    {
      "affiliations": [
        "Pediatrics and Research Center, Centre Hospitalier Universitaire Sainte-Justine, Montreal, Quebec, Canada"
      ],
      "name": "Thuy Mai Luu"
    }
  ],
  "title": "Parent-to-parent recommendations for coping with congenital heart disease: a mixed-methods study",
  "uid": "dc366bcf-836d-53a8-a4ab-719959438f55"
}