Families' Experiences of Paediatric ICC Diagnosis

  • Research type

    Research Study

  • Full title

    How do families experience receiving a positive diagnosis for an inherited cardiac condition for a child: the experiences of children with a diagnosis, their parents and siblings.

  • IRAS ID

    167395

  • Contact name

    Jan Till

  • Contact email

    j.till@rbht.nhs.uk

  • Sponsor organisation

    Royal Brompton and Harefield NHS Foundation Trust

  • Duration of Study in the UK

    1 years, 0 months, 1 days

  • Research summary

    This study aims to further understand the experiences of children, their parents and siblings around the time when the child and their family are informed of a diagnosis of an inherited cardiac condition (ICC). An ICC comprise of a number of conditions that affect either the heart muscle (cardiomyopathies), or the electrical circuits of the heart (ion channelopathies). ICCs can result in the heart working ineffectively, dangerous arrhythmias and sudden death.

    Participants will be recruited from the ICC service at the hospital. The nature of ICCs is such that multiple members of the same family may be affected by the same diagnosis: sometimes the child will be the first person to receive a diagnosis and sometimes other relatives will have a diagnosis.

    Paediatric patients aged 8-16 who have been given an ICC diagnosis, their parents and siblings will be contacted 2 weeks after receiving the diagnosis to invite them to participate. Families who wish to take part will be invited to participate in an interview 2-3 months after they received the diagnosis from the hospital. At least ten families (and therefore at least 30 individuals including children with the diagnosis, parents and siblings) will be interviewed separately. All members of the family who wish to participate will be interviewed separately about their experience of the child’s diagnosis. Children who received the diagnosis, their parents and siblings will be asked about their experiences of the communication about the diagnosis to them, their child or their siblings. Participants can be included even if not all family members wish to take part. For example, parents can take part even if their child does not.

    Adults and children who agree to take part will complete demographic and quantitative mood questionnaires. Each individual will then participate in an individual semi structured interview. All participants will be asked open questions about their experiences. Written transcripts from the interviews with children and their parent will be analysed using Thematic Analysis (a recognised and widely used method of qualitative analysis) to identify themes that emerge across the experiences of children, their parents and siblings.

  • REC name

    London - City & East Research Ethics Committee

  • REC reference

    16/LO/0546

  • Date of REC Opinion

    19 Apr 2016

  • REC opinion

    Further Information Favourable Opinion