Psychological adaptation to molecular autopsy findings following sudden cardiac death in the young

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.

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Section: Discussionmentioning

confidence: 96%

Needs analysis of parents following sudden cardiac death in the young

et al. 2020

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“…In particular, many participants 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 our families. 9 At present, this is likely not greater than 15% and there is a high likelihood of uncertain genetic findings especially with increasing gene panel sizes. 1,10 While there was a clear need for understanding the cause of death, it should be noted that these families were recruited from a specialised multidisciplinary clinic where there is a strong interest in understanding SCD in the young.…”

Section: Discussionmentioning

confidence: 96%

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

McDonald

Sharpe

Yeates

et al. 2019

Preprint

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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.

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“…How a family facing profound psychological challenges can understand and adapt to the high degree of uncertainty this testing often yields is not well understood, but it has the potential to inflict harm. A small 2018 study showed that more than one-third of firstdegree relatives of a young victim of sudden cardiac death showed difficulty adapting psychologically to the postmortem genetic test information (Bates et al 2019). Further research to establish an effective method to integrate psychotherapeutic counseling into the cardiac clinic setting is needed.…”

Section: Grief After Sudden Cardiac Deathmentioning

confidence: 99%

Psychological adaptation to molecular autopsy findings following sudden cardiac death in the young

Cited by 23 publications

References 21 publications

Needs analysis of parents following sudden cardiac death in the young

Needs analysis of parents following sudden cardiac death in the young

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

Psychological Issues in Managing Families with Inherited Cardiovascular Diseases

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