Needs analysis of parents following sudden cardiac death in the young

Needs analysis of parents following sudden cardiac death in the young.

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Item Type: Article
Status: Published
Official URL:
Journal or Publication Title: Open Heart
Volume: 7
Number: 2
Page Range: e001120
Date: 2020
Divisions: Cardio Genomics
Molecular Cardiology
Depositing User: General Admin
Identification Number: 10.1136/openhrt-2019-001120
ISSN: 2053-3624
Date Deposited: 04 Jan 2021 01:28

Objective The sudden cardiac death (SCD) of a young person is a devastating event for any parent. Inherited heart disease is often either identified or assumed to be the cause. Few studies have explored the psychosocial impact to the surviving at-risk family members. We sought to investigate the needs of parents who have experienced the SCD of their child (≤45 years).

Methods A quantitative needs analysis questionnaire was developed based on semistructured interviews, including one focus group and a review of relevant literature. Eligible participants were invited to participate in this cross-sectional survey study.

Results There were 38 parents who completed a quantitative survey. Parents’ perceived needs for information and support spanned medical, psychosocial, spiritual and financial domains. Of the support and information needs assessed, medical needs were identified as the most important domain, followed by psychosocial, spiritual and financial. Importantly, psychosocial information and support needs were reported as the most unmet need, endorsed by 54% of parents. Medical information and support needs were reported as unmet by almost one third of parents. The two most endorsed needs were ‘To have the option of whether or not you would pursue genetic testing for yourself or family members’ and ‘To understand what happened’.

Conclusions This work demonstrates for the first time, the multifactorial needs of parents after SCD in the young. With the greatest unmet need reported as psychosocial needs, there is clear necessity to find ways of integrating psychological support in to the care of families after SCD in the young.

McDonald, Kristie
Sharpe, Louise
Yeates, Laura
Semsarian, Christopher
Ingles, Jodie
Last Modified: 04 Jan 2021 01:28

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