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.
- sudden cardiac death
- needs analysis
- psychosocial support
- inherited heart disease
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Contributors All authors contributed to study design, data collection and critical revision of the manuscript. KM, JI, LY and LS contributed to data analysis. KM and JI drafted the manuscript.
Funding CS is the recipient of a National Health and Medical Research Council (NHMRC) Practitioner Fellowship (#1059156). JI is the recipient of an NHMRC Career Development Fellowship (#1162929). This study is funded in part by an NHMRC Project Grant (#1059515) and National Heart Foundation Future Leader Fellowship (#100833).
Competing interests JI receives research grant support from Myokardia, Inc.
Patient consent for publication Not required.
Ethics approval Royal Prince Alfred Hospital Human Research Ethics Committee approval (X13-0142 & HREC/13RPAH/201).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplementary information. Data are available in the online supplementary files and from the authors by request.
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