Needs analysis of parents following sudden cardiac death in the young

Abstract

ObjectiveThe 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).MethodsA 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.ResultsThere 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’.ConclusionsThis 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.

A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support

“…First, our results are broadly in line with general observations about the devastating impact of the sudden loss of a child and resulting support needs. 8 As regards the specific challenges of YSCD, our results concur with the recent needs analysis by McDonald et al., 10 which identified needs for instrumental support in the form of a safe place to turn to and emotional support through affiliation and informational input. This is reflected in Theme 1 (YSCD community support as offering a place of safety).…”

“…McDonald et al. 10 observed that the need for medical information and for understanding the cause of the death constituted the most significant need in families and was mostly unmet. Our study showed that making sense of the death was not only about medical explanations but about meaning-making at a broader level, reflecting definitions of sense-making and meaning-making in the literature on trauma and bereavement.…”

“… 9 A cross-sectional survey investigating the support needs of Australian YSCD-bereaved families found that psychosocial needs – particularly the need to understand the cause of death – were most likely to be left unmet in comparison with medical, spiritual and financial needs. 10 While the authors identified broad categories of need, more detailed understanding of those needs and of what would be most helpful to families is required. Families may, for example, seek support from dedicated community organisations that offer medical and social (peer) support outside or alongside statutory service provisions.…”

2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families

“…A recent needs analysis of parents who had experienced the SCD of their child (including adult children) found that while medical information and support were the most important need, psychological information and support were the most unmet need. 126 Nearly threequarters reported wanting access to professional counseling or psychological services. Further, many indicated access to genetic testing or understanding the genetic cause to be an important need, highlighting the importance of maintaining realistic expectations regarding the diagnostic yield of postmortem genetic testing with families.…”

2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families

“…A recent needs analysis of parents who had experienced the SCD of their child (including adult children) found that while medical information and support were the most important need, psychological information and support were the most unmet need 126 . Nearly three‐quarters reported wanting access to professional counseling or psychological services.…”