How to develop a clinic for sudden cardiac arrest survivors and families of non-survivors

2017 ◽  
Vol 27 (S1) ◽  
pp. S3-S9 ◽  
Author(s):  
Dominic J. Abrams

AbstractThe investigation of the aetiology of sudden cardiac arrest or death in a young person combines features of a traditional clinical medical examination with those of forensic medicine. Nuances of the immediate peri-event history, when available, can be paramount. New genetic tools have greatly improved the yield of such investigations, but they must be carefully interpreted by genetic specialists. The approach to surviving patients, their family members, and to family members of non-survivors is best achieved in a structured programme that includes all appropriate specialists and support personnel. As an example, this may include all appropriate paediatric and internal medicine specialists, a geneticist, a genetic counsellor, a clinical psychologist, nurse specialist(s), and a programme coordinator. This family-centred strategy affords the patient, if surviving, and all family members the necessary emotional and medical support while at the same time providing the necessary diagnostic and therapeutic approaches.

Circulation ◽  
2018 ◽  
Vol 138 (Suppl_2) ◽  
Author(s):  
Katie N Dainty ◽  
Bianca Seaton ◽  
Richard Verbeek

Background: Of those victims that are discharged alive following sudden cardiac arrest (SCA), the five-year survival rate is upwards of 75%. However, the survivor experience of “living” and their quality of life after such a life-changing event can be quite variable. Unfortunately traditional outcome measures in the SCA literature make gross, snapshot assumptions about what constitutes a “good” outcome and rarely account for life after hospital discharge. The objective of this study was to understand the survivor and family/caregiver experience of life after SCA and what outcomes are important to them as “life goes on”. Methods: In-depth qualitative interviews were conducted with survivors and their families/caregivers at various stages of survival. Survivors and family members were interviewed together and separately. The interviews focused on concepts such as what their recovery journey was like, what long-term issues were most important to them and how we might implement measures of such concepts into more research and practice. Interviews were audio-taped, transcribed verbatim and analyzed by the authors using constant comparative thematic analysis techniques. Results: During in-depth interviews with more than 30 survivors and caregivers we heard that despite being a relatively high functioning group, their lives have been deeply affected by their cardiac arrest experience. They spoke about the importance of both psychologic and physical recovery and the influence of latent depression, anxiety, memory-loss, fatigue, infertility, changes in body image and relationships with loved ones. For some there have also been unique challenges with having an implanted cardiac defibrillator (ICD). Spouses/family members spoke about the caregiver burden, anxiety around their loved ones health and the impact of not having any sense of what to expect after discharge. Conclusions: The psycho-social type outcomes identified as very influential by survivors and families are almost entirely unmeasured in the resuscitation literature. This robust qualitative work gives us important insight that we hope to use to design more survivor-centred outcome measures for prospective use in research and practice. (*Abstract will be co-presented with an SCA survivor)


2021 ◽  
Vol 20 (Supplement_1) ◽  
Author(s):  
N Carlsson ◽  
K Arestedt ◽  
A Alvariza ◽  
L Axelsson ◽  
A Bremer

Abstract Funding Acknowledgements Type of funding sources: Public Institution(s). Main funding source(s): Linnaeus University, Sweden Background High incidence and mortality make cardiac arrest one of the leading causes of death in western countries. Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with increased risk for prolonged grief disorder. This serious disorder needs to be identified and treated. Purpose To explore factors associated with symptoms of prolonged grief among bereaved family members of persons who died from sudden cardiac arrest. Methods This cross-sectional observational study was based on a questionnaire to bereaved family members six month after the death. Background questions about the family member and the loss, the Prolonged Grief disorder instrument (PG-13) and the Multidimensional Scale of Perceived Social Support (MSPSS) were included and analyzed using univariate and multiple linear regression. Results This study included 108 family members who were adult children (n = 55, 51%), spouse (n = 36, 33%), or significant others (n = 17, 16%) to a person that died of sudden cardiac arrest. The mean age of the family members was 61 years (range 25-87), most were women (n = 74, 69%), and did not have a university degree (n = 74, 69%). A majority of the cardiac arrests took place out of hospital (n = 59, 81%). One third of the family members were present during the resuscitation (n = 35, 32%). A minority was offered professional support from the healthcare service (n = 93, 86%) and few sought healthcare for problems in relation to the loss (n = 19, 18%) and/or received professional support from a psychologist or equivalent (n = 16, 15%). In total, 18% (n = 19) reported symptoms of prolonged grief and the prevalence was even higher among spouses (n = 10, 29%). In the univariate regression models, being a spouse of the deceased (B = 6.34, p = 0.004, R2 = 0.08), sought healthcare related to the loss (B = 10.51, p < 0.001, R2 = 0.15), offered support from the healthcare related to the loss (B = 6.28, p = 0.030, R2 = 0.05), received professional support for the loss (B = 7.30, p = 0.011, R2 = 0.06), and lower levels of perceived social support (B=-0.28, p < 0.001, R2 = 0.16) were significantly associated with higher levels of symptoms of prolonged grief. All these variables, except offered support from the healthcare, were still significant in the multiple regression model and explained 35% of the total variance in PG-13 (F(4, 96)=12.96, p < 0.001). Age, sex, education, and presence during resuscitation were not significantly associated with symptoms of prolonged grief in any of the regression models. Conclusion Prolonged grief is a significant problem in bereaved family members of persons who died from sudden cardiac arrest, particularly in spouses, those in need of professional support from the healthcare, and those with low social support. Bereavement support should be offered to reduce the risk to developing prolonged grief after unsuccessful resuscitation and sudden death from cardiac arrest.


Death Studies ◽  
2020 ◽  
pp. 1-10
Author(s):  
Nina Carlsson ◽  
Anders Bremer ◽  
Anette Alvariza ◽  
Kristofer Årestedt ◽  
Lena Axelsson

2021 ◽  
pp. 003022282110181
Author(s):  
Nina Carlsson ◽  
Anette Alvariza ◽  
Anders Bremer ◽  
Lena Axelsson ◽  
Kristofer Årestedt

Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members’ health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.


2021 ◽  
Vol 20 ◽  
pp. 160940692110486
Author(s):  
Matthew J. Douma ◽  
Timothy A. D. Graham ◽  
Allison Bone ◽  
Samina Ali ◽  
Liz Dennett ◽  
...  

Background: Sudden cardiac arrest is a leading cause of death. Family members can be deeply impacted by sudden loss or uncertainty about survivor outcomes. The objective of this systematic review will be to identify, appraise, and meta-synthesize qualitative evidence regarding family care-needs when experiencing cardiac arrest. Methods: This systematic review of qualitative studies and meta-synthesis will be conducted by multidisciplinary researchers in partnership with patient and family partners who have lived-experience of cardiac arrest. We will search MEDLINE, Embase, CINAHL, Theses and Dissertations Global, SocIndex, Scopus, Web of Science, PsycINFO, and Google Scholar. We will include qualitative research describing the experience and care needs of family members. We will also search reference lists, conduct forward citation searches, and contact content experts. We will assess the methodological quality of included studies using the Critical Appraisal Skills Programme tool. Two team members will independently review studies, extract data, and assess methodological quality. Disagreements will be resolved by consensus. We will use thematic framework analysis to analyze and synthesize narrative data, after which the review team and stakeholders discuss the findings and make any necessary changes. Our thematic synthesis will follow three steps: (i) initial coding and grouping of codes, (ii) formation of descriptive themes, and (iii) transcending the data to form novel insights and theories (analytical themes). The review will be reported in accordance with the ENTREQ and GRIPP2 guidelines. We will apply the Confidence in the Evidence from Reviews of Qualitative (CERQual) research to assess the robustness of our findings. Review Registration: This protocol has been registered with the International Prospective Register of Systematic Reviews (PROSPERO), registration number CRD42021236431 and Open Science Framework https://osf.io/fxp5g .


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