A Needs Analysis of Parents Following Sudden Cardiac Death in the Young

Abstract

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). A quantitative needs analysis questionnaire was developed based on semi-structured interviews, including one focus group, and a review of relevant literature. There were 38 parents who completed a cross-sectional quantitative survey. Parents perceived needs for information and support spanned medical, psychosocial, spiritual and financial domains. Medical information and support needs were identified as the most important domains, followed by psychosocial, spiritual and financial information and support needs. 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″. 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.

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).…”

“…This is reflected in Theme 2 (YSCD community support as fostering sense-making). 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.…”

Retracted Article: A Spiritual Prescription to Bereaved Parents of Children Died Due to Coronavirus Disease 2019

“…Facilitating the “good death,” an obvious priority of care for everyone involved with the dying child, should also be a priority for the health of bereaved families and affected health care providers. 5 McDonald et al 6 analyzed the needs of parents following sudden cardiac death in young ones. They showed that parents' perceived needs for information and support spanned the medical, psychosocial, spiritual, and financial domains.…”

Shock to the Heart: Psychosocial Implications and Applications of Sudden Cardiac Death in the Young

“…Specifically, they facilitate the processing of the unexpected event, as well as offer meaningful ways to maintain a continuing bond with the deceased (i.e., fundraising for young SCD-related community organizations) [63••]. Additionally, recent evidence describing the multifactorial needs of parents following a young SCD noted that psychosocial needs were the most unmet; more than half (54%) of their parent sample reported psychosocial information and support needs as unfulfilled by the clinical team [64]. As previously shown, proper psychological management may help facilitate post-traumatic growth experiences following the death of a loved one, improving personal strength, resilience, and empathy [60].…”