Trapped in a disrupted normality: Survivors’ and partners’ experiences of life after a sudden cardiac arrest

Whitehead, Laura; Tierney, Stephanie; Biggerstaff, Deborah; Perkins, Gavin D.; Haywood, Kirstie L.

doi:10.1016/j.resuscitation.2019.12.017

Cited by 37 publications

(40 citation statements)

References 45 publications

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“…3 ). We note that many of these areas – most notably, anxiety, memory, re-establishing a routine, depression and driving – were recently identified as the biggest challenges to overcome to achieve a ‘new normal’, 18 and difficulties in transitioning to a ‘new normal’ were also described using semi-structured interviews in a small cohort of survivors, 19 with emotional, physical and psychosocial factors all playing a role. The focus on these areas is strongly in line with AHA and ERC recommendations around timely assessment of cognitive, emotional, and physical domains.…”

Section: Discussionmentioning

confidence: 96%

Follow-up care after out-of-hospital cardiac arrest: A pilot study of survivors and families’ experiences and recommendations

et al. 2021

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Background and objectives Cognitive and physical difficulties are common in survivors of out-of-hospital cardiac arrest (OHCA); both survivors and close family members are also at risk of developing mood disorders. In the UK, dedicated follow-up pathways for OHCA survivors and their family are lacking. A cohort of survivors and family members were surveyed regarding their experience of post-discharge care and their recommended improvements. Method 123 OHCA survivors and 39 family members completed questionnaires during an educational event or later online. Questions addressed both the actual follow-up offered and the perceived requirements for optimal follow-up from the patient and family perspective, including consideration of timing, professionals involved, involvement of family members and areas they felt should be covered. Results Outpatient follow-up was commonly arranged after OHCA (77%). This was most often conducted by a cardiologist alone (80%) but survivors suggested that other professionals should also be involved (e.g. psychologist/counsellor, 64%). Topics recommended for consideration included cardiac arrest-related issues (heart disease; cause of arrest) mental fatigue/sleep disturbance, cognitive problems, emotional problems and daily activities. Most survivors advocated an early review (<1month; 61%). Most family members reported some psychological difficulties (95%); many of them (95%) advocated a dedicated follow-up appointment for family members of survivors. Conclusions The majority of OHCA survivors advocated an early follow-up following hospital discharge and a holistic, multidimensional assessment of arrest sequelae. These results suggest that current OHCA follow-up often fails to address patient-centred issues and to provide access to professionals deemed important by survivors and family members.

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Section: Discussionmentioning

confidence: 96%

Follow-up care after out-of-hospital cardiac arrest: A pilot study of survivors and families’ experiences and recommendations

et al. 2021

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“…Varios estudios demuestran que la familia hubiera querido estar presente en el proceso de reanimación del fallecido y que creen que su presencia hubiera podido ser de utilidad para el equipo sanitario (15,(17)(18)(19)(20) . Es frecuente el sentimiento de desesperanza en estos casos (21)(22)(23) . Además, supone un impacto emocional enorme (18,20,(24)(25)(26)(27) .…”

Section: Categorías De Análisis De Los Resultadosunclassified

“…En 2001 un grupo de enfermeros del medio extrahospitalario demostraron que la presencia de familiares en la PCR suponía una reducción importante en la ansiedad familiar, sensación de que se ha hecho todo lo posible para salvar la vida del paciente, sentimientos de utilidad, disrupción menos brusca de la relación con su familiar y además facilita el duelo (21) .…”

Section: Categorías De Análisis De Los Resultadosunclassified

Análisis de los programas para la presencia de familiares en la parada cardiorrespiratoria extrahospitalaria en paciente adulto

García

2021

Enf Global

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Objetivo: Explorar los programas orientados a la participación de familiares en situaciones de PCR en adultos en el medio extrahospitalario.Método: Revisión narrativa de la literatura científica, en bases de datos primarias (Scielo, PubMed, Cuiden y Cochrane Plus y CINAHL), con empleo de lenguaje estructurado DeCS y MeSH, de 2005 a 2020, en español e inglés. Se obtienen 23 estudios.Resultados: Los estudios muestran que el duelo de los familiares de una parada cardiorrespiratoria en el medio extrahospitalario es menos traumática si se les permite estar presentes. Permanecer junto a la víctima debe asegurarse salvo que el profesional considere que es perjudicial. Las ventajas de la presencia de familiares son tanto para el familiar como para el equipo asistencial. A pesar de existir una necesidad social y ética de acuerdo con el principio de autonomía del paciente para la implementación de estos programas apenas existen y esto suele ser debido a las resistencias generadas por los propios profesionales o los gestores.Conclusiones: Las principales sociedades científicas internacionales recomiendan en caso de PCR en el adulto en el medio extrahospitalario, la implantación de programas para la presencia de familiares, lo que hace que se convierta en una necesidad. La literatura científica demuestra más ventajas que inconvenientes, fundamentalmente en cuanto a un mejor duelo en familiares y mayor satisfacción y menor posibilidad de demandas jurídicas en los sanitarios, promoción de la humanización de los cuidados que se traduciría en un gasto asistencial menor en prevalencia de duelo patológico. Objective: Explore programs aimed at the participation of family members in situations of CRP in adults in the out-of-hospital setting.Method: Narrative review of the scientific literature, in primary databases (Scielo, PubMed, Cuiden and Cochrane Plus and CINAHL), using DeCS and MeSH structured language, from 2005 to 2020, in Spanish and English. 23 studies are obtained.Results: Studies show that mourning for family members of a cardiorespiratory arrest in the out-of-hospital setting is less traumatic if they are allowed to be present. Staying with the victim must be ensured unless the professional considers that it is harmful. The advantages of the presence of family members are as much for the family member as for the healthcare team. Despite the existence of a social and ethical need in accordance with the principle of patient autonomy for the implementation of these programs, they hardly exist and this is usually due to the resistance generated by the professionals or managers themselves.Conclusions: In the case of cardiorespiratory arrest in adults in the out-of-hospital setting, the main international scientific societies recommend the implementation of programs for the presence of family members, which makes it a necessity. The scientific literature demonstrates more advantages than disadvantages, fundamentally in terms of better grief in family members and greater satisfaction and less possibility of legal claims in health professionals, promoting the humanization of care that would translate into lower healthcare costs in the prevalence of grief pathological. Objetivo: explorar programas voltados à participação de familiares em situação de PCR em adultos no ambiente extra-hospitalar.Método: revisão narrativa da literatura científica, em bases de dados primárias (Scielo, PubMed, Cuiden e Cochrane Plus e CINAHL), utilizando a linguagem estruturada DeCS e MeSH, de 2005 a 2020, em espanhol e inglês. 23 estudos foram obtidos.Resultados: estudos mostram que o luto de familiares por parada cardiorrespiratória em ambiente extra-hospitalar é menos traumático se eles puderem estar presentes. A permanência com a vítima deve ser assegurada, a menos que o profissional considere prejudicial. As vantagens da presença de familiares são tanto para o familiar quanto para a equipe de saúde. Apesar da existência de uma necessidade social e ética de acordo com o princípio da autonomia do paciente para a implantação desses programas, eles quase não existem e isso geralmente se deve às resistências geradas pelos próprios profissionais ou pelos gestores.Conclusões: as principais sociedades científicas internacionais recomendam, no caso da PCR em adultos em ambiente extra-hospitalar, a implantação de programas de presença de familiares, o que a torna uma necessidade. A literatura científica mostra mais vantagens do que desvantagens, fundamentalmente em termos de melhor luto nos familiares e maior satisfação e menor possibilidade de demandas judiciais nos trabalhadores da saúde, promovendo a humanização da assistência que se traduziria em menores gastos com saúde nas prevalências do luto patológico.

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“…This deferring of consent from SCA survivors was seen as acceptable. The appropriate length of deferment was largely determined by the length of situational incapacity, since recovery for SCA survivors is hindered by a range of physical, emotional, cognitive and social challenges [63]. Within the ARREST study, a time period of three months was thought to be appropriate, but we recommend further normative study on this issue and suggest leaving room for an individualized approach due to the differences in recovery time.…”

Section: Consent or Non-conception?mentioning

confidence: 99%

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

et al. 2021

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Background Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research. Methods We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues. Results Sudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives. Conclusions Sudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well.

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Trapped in a disrupted normality: Survivors’ and partners’ experiences of life after a sudden cardiac arrest

Cited by 37 publications

References 45 publications

Follow-up care after out-of-hospital cardiac arrest: A pilot study of survivors and families’ experiences and recommendations

Follow-up care after out-of-hospital cardiac arrest: A pilot study of survivors and families’ experiences and recommendations

Análisis de los programas para la presencia de familiares en la parada cardiorrespiratoria extrahospitalaria en paciente adulto

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

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