What are the Care Needs of Families Experiencing Cardiac Arrest Care? A Survivor and Family-Performed Systematic Review and Qualitative Meta-Synthesis Protocol

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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Re: Family Presence during Resuscitation in Paediatric Cardiac Arrest: A Systematic Review. Offering Parents the Choice to View Resuscitation of their Child in Case of Sudden Cardiac Arrest

Resuscitation ◽

10.1016/j.resuscitation.2021.03.039 ◽

2021 ◽

Author(s):

Sabine Lemoine ◽

Jean-Louis Chabernaud ◽

Daniel Jost ◽

Bertrand Prunet

Keyword(s):

Systematic Review ◽

Cardiac Arrest ◽

Sudden Cardiac Arrest ◽

Family Presence ◽

Paediatric Cardiac Arrest

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Palliative care for older South Asian migrants: A systematic review

Palliative & Supportive Care ◽

10.1017/s1478951519000397 ◽

2019 ◽

Vol 18 (3) ◽

pp. 346-358 ◽

Cited By ~ 1

Author(s):

Jahan Shabnam ◽

Helle Timm ◽

Dorthe S. Nielsen ◽

Mette Raunkiaer

Keyword(s):

Systematic Review ◽

Decision Making ◽

Palliative Care ◽

South Asian ◽

Family Members ◽

Care Practice ◽

Care Needs ◽

International Evidence ◽

Migrant Families ◽

Care Decision

AbstractObjectiveSouth Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.MethodsA systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.ResultsA total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.Significance of resultsInvolvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

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Sudden Cardiac Arrest in the Young Due to Inherited Arrhythmias: The Importance of Family Care

Pacing and Clinical Electrophysiology ◽

10.1111/j.1540-8159.2009.02395.x ◽

2009 ◽

Vol 32 ◽

pp. S19-S22 ◽

Cited By ~ 4

Author(s):

G. MICHAEL VINCENT

Keyword(s):

Cardiac Arrest ◽

Sudden Cardiac Arrest ◽

Family Care ◽

Inherited Arrhythmias

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Balancing Between Closeness and Distance: Emergency Medical Services Personnel’s Experiences of Caring for Families at Out-of-Hospital Cardiac Arrest and Sudden Death

Prehospital and Disaster Medicine ◽

10.1017/s1049023x12000167 ◽

2012 ◽

Vol 27 (1) ◽

pp. 42-52 ◽

Cited By ~ 30

Author(s):

Anders Bremer ◽

Karin Dahlberg ◽

Lars Sandman

Keyword(s):

Decision Making ◽

Cardiac Arrest ◽

Sudden Death ◽

Patient Care ◽

Emergency Medical Services ◽

Family Members ◽

Family Care ◽

Emergency Medical ◽

Bereaved Family ◽

Hospital Cardiac Arrest

AbstractIntroduction: Out-of-hospital cardiac arrest (OHCA) is a lethal health problem that affects between 236,000 and 325,000 people in the United States each year. As resuscitation attempts are unsuccessful in 70-98% of OHCA cases, Emergency Medical Services (EMS) personnel often face the needs of bereaved family members.Problem: Decisions to continue or terminate resuscitation at OHCA are influenced by factors other than patient clinical characteristics, such as EMS personnel’s knowledge, attitudes, and beliefs regarding family emotional preparedness. However, there is little research exploring how EMS personnel care for bereaved family members, or how they are affected by family dynamics and the emotional contexts. The aim of this study is to analyze EMS personnel’s experiences of caring for families when patients suffer cardiac arrest and sudden death.Methods: The study is based on a hermeneutic lifeworld approach. Qualitative interviews were conducted with 10 EMS personnel from an EMS agency in southern Sweden.Results: The EMS personnel interviewed felt responsible for both patient care and family care, and sometimes failed to prioritize these responsibilities as a result of their own perceptions, feelings and reactions. Moving from patient care to family care implied a movement from well-structured guidance to a situational response, where the personnel were forced to balance between interpretive reasoning and a more direct emotional response, at their own discretion. With such affective responses in decision-making, the personnel risked erroneous conclusions and care relationships with elements of dishonesty, misguided benevolence and false hopes. The ability to recognize and respond to people’s existential questions and needs was essential. It was dependent on the EMS personnel’s balance between closeness and distance, and on their courage in facing the emotional expressions of the families, as well as the personnel’s own vulnerability. The presence of family members placed great demands on mobility (moving from patient care to family care) in the decision-making process, invoking a need for ethical competence.Conclusion: Ethical caring competence is needed in the care of bereaved family members to avoid additional suffering. Opportunities to reflect on these situations within a framework of care ethics, continuous moral education, and clinical ethics training are needed. Support in dealing with personal discomfort and clear guidelines on family support could benefit EMS personnel.

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Family members’ experiences of caring for a person with dementia at end-of-life

10.26686/wgtn.17012990 ◽

2021 ◽

Author(s):

◽

Lucy Hester Nunns

Keyword(s):

Lived Experience ◽

End Of Life ◽

Family Member ◽

Terminal Illness ◽

Living Arrangement ◽

Family Members ◽

Phenomenological Approach ◽

Care Needs ◽

Optimal Care ◽

People With Dementia

<p>Dementia is now recognised as a progressive terminal illness causing significant health-care needs for people with dementia and challenges to their family member caregivers. The purpose of this study was to understand the lived experience of family member caregivers of people with dementia at end-of-life. The research was conducted using a phenomenological approach and data were analysed using Colaizzi’s framework. Five family members were interviewed about their experiences of caregiving for six people with dementia. Four themes were revealed. These were: ‘Being at the Coalface’ with subthemes of overload, and experiencing guilt, shame and resentment; ‘Moving Heaven and Earth’ with subthemes of love and preserving dignity; ‘Facing the Change’ with subthemes of loss of the person, living arrangement transitions, and one dimensional conversations; and the fourth theme was ‘Finding the Answers’ with subthemes of diagnosis and preparedness. All the themes are closely interrelated and throughout all of the participants’ narratives, ‘love’ was the one constant that wove the themes together. This study gives voice to the inner experiences of the family caregivers who were supporting people with dementia in New Zealand. The findings of this study have elucidated many implications for practice and areas for innovation in supporting family member caregivers of people with dementia. This study has identified that the areas in most need of improvement are timely diagnosis, access to wrap-around support services, advance care planning opportunities and optimal care at end-of-life.</p>

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Family members’ experiences of caring for a person with dementia at end-of-life

10.26686/wgtn.17012990.v1 ◽

2021 ◽

Author(s):

◽

Lucy Hester Nunns

Keyword(s):

Lived Experience ◽

End Of Life ◽

Family Member ◽

Terminal Illness ◽

Living Arrangement ◽

Family Members ◽

Phenomenological Approach ◽

Care Needs ◽

Optimal Care ◽

People With Dementia

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Abstract 133: "I’m Not the Same Person....": Understanding Cardiac Arrest Survivorship and Long -Term Outcomes From the perspective of Survivors and Families

Circulation ◽

10.1161/circ.138.suppl_2.133 ◽

2018 ◽

Vol 138 (Suppl_2) ◽

Author(s):

Katie N Dainty ◽

Bianca Seaton ◽

Richard Verbeek

Keyword(s):

Cardiac Arrest ◽

Outcome Measures ◽

Qualitative Interviews ◽

Family Members ◽

Sudden Cardiac Arrest ◽

Memory Loss ◽

Research And Practice ◽

Qualitative Work ◽

The Impact

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)

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Factors associated with symptoms of prolonged grief among bereaved family members of persons who died from sudden cardiac arrest

European Journal of Cardiovascular Nursing ◽

10.1093/eurjcn/zvab060.088 ◽

2021 ◽

Vol 20 (Supplement_1) ◽

Author(s):

N Carlsson ◽

K Arestedt ◽

A Alvariza ◽

L Axelsson ◽

A Bremer

Keyword(s):

Social Support ◽

Cardiac Arrest ◽

Regression Models ◽

Family Members ◽

Sudden Cardiac Arrest ◽

Professional Support ◽

Prolonged Grief ◽

Factors Associated ◽

The Family ◽

Bereaved Family

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.

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