Outcomes and experiences of relatives of patients discharged home after critical illness: A systematic integrative review

Background. Patients discharged from intensive care may experience psychological and physical deficits resulting in a long and complex rehabilitation upon discharge. Relatives are also vulnerable to psychological pathologies and diminished health‐related quality of life following the patients' critical illness. Relatives often provide care during the patients' rehabilitation, which may influence their health. Aim. To report the outcomes and experiences of relatives of patients discharged home after critical illness. Design. Systematic integrative review. Methods. Electronic databases Cumulative Index of Nursing and Allied Health Literature, PubMed, Embase®, and PsychINFO® were searched using keywords, synonyms, and medical subject headings. Reference lists of articles and critical care journals were manually searched. Studies eligible for inclusion reported primary research and were published in English between 2007 and 2017. Studies were appraised using the Critical Appraisal Skills Programme checklists. Data were extracted and then analysed according to framework. Findings. Twenty‐five studies were included: 19 quantitative, 4 qualitative, and 1 mixed method study. Three themes were identified: health and well‐being, employment and lifestyle, and caregiving role. Health and well‐being reports the incidence and significance of psychological morbidity such as post‐traumatic stress disorder, anxiety, and depression. Employment and lifestyle describes the impact of caregiving on the relative's ability to work and engage in usual social activities. The final theme describes and discusses the caregiving role in terms of activities of daily living, knowledge and skills, and adaption to the role. Conclusions. There is a significant and meaningful impact on outcomes and experiences of relatives of patients discharged home after critical illness. Relatives' caregiving is embedded within the context of their psychological morbidity and social adjustment. Relevance to practice. If informal care giving is to be sustainable, there is a need to design effective strategies of supporting families through all stages of the critical illness trajectory

Patients\u27 Perceptions of Quality of Life and Resource Availability After Critical Illness

Physical, psychological, and social debilities are common among survivors of critical illness. Survivors of critical illness require rehabilitative services during recovery in order to return to functional independence, but the structure and access of such services remains unclear. The purpose of this qualitative study was to explore the vital issues affecting quality of life from the perspective of critical illness survivors and to understand these patients\u27 experiences with rehabilitative services in the United States. The theoretical framework guiding this study was Weber\u27s rational choice theory, and a phenomenological study design was employed. The research questions focused on the survivors\u27 experiences with rehabilitative services following critical illness and post-intensive care unit quality of life. Participants were recruited using purposeful sampling. A researcher developed instrument was used to conduct 12 semistructured interviews in central North Carolina. Data from the interviews were coded for thematic analysis. The findings identified that aftercare lacked unity, was limited by disparate information, and overuses informal caregivers. In addition, survivors\u27 recovery depended on being prepared for post-intensive care unit life, access to recovery specific support structures, and the survivors\u27 ability to adapt to a new normalcy. Survivors experienced gratitude for being saved, which empowered them to embrace new life priorities. The implications for social change include improved understanding of urgently needed health care policies to provide essential therapies and services required to support intensive care unit survivors on their journey to recovery

The Relationship Between Stress, Anxiety, Depression, Coping and Satisfaction with Care Among Family of Adult Acute Care Trauma Patients

Background: Surprisingly few studies have considered the impact of trauma on adult family members of those admitted to the acute care, rather than ICU. Throughout the course of hospitalization, as patients move through different levels of care, family members must learn to adapt to, and cope with changes in care delivery. Purpose: To explore the literature to understand the state of the science, to assess the psychosocial and functional impact on family of adult trauma in acute care, and to identify predictors of coping and satisfaction with care provided to meet their needs. Design: The Lazarus & Folkman (1984) Stress, Appraisal and Coping Theory framed this non-experimental descriptive, correlational design. Methods: Eighty-six family members of adult trauma survivors completed six questionnaires, 72 hours after unexpected hospitalization, to assess Stress (IES-R), Anxiety and Depression (HADS), Coping (CISS-SSC), and Satisfaction with Care (CCFSS). A demographic questionnaire was used to describe the sample and previous trauma was assessed using Life Event Checklist-DSM5. Predictors for coping and satisfaction with care were explored. Results: The mean scores indicated high anxiety and stress levels. Patients were predominantly male (N= 59, 68.6%), while the caregivers were female (N=60, 69.8%). Almost half (48.9%) scored above clinically relevant levels on the HADS-anxiety subscale, and 51.9% had positive IES-R scores above the cut point ≥33 for severe stress, consistent with symptoms of acute stress disorder. Respondents scored in the low to medium range on the CISS-SSC, coping scale. They were generally moderately satisfied with care provided. Communication identified as a need by family members. Hierarchical regression models identified anxiety as the primary predictor of coping. Other predictors included age, gender, number of dependents, and previous trauma. Conclusion: The impact of the traumatic injury in this study is similar to that reported within critical care literature and offers insight into the psychosocial impact on family of adult trauma survivors. This is the first study to distinguish between critical and acute care environments. Results provide guidance for the development of interventions and strategies to mitigate negative consequences on the patient, staff and family

ICU-Related Medical Trauma: a socioecological exploration of contributing factors and experiences of traumatic stress in adult ICU survivors

Advances in biomedical technologies and critical care are leading to increased survivorship rates of ICU patients. During critical care, patients confront a variety of stressors that may contribute to adverse psychological outcomes, including posttraumatic stress. The nature of posttraumatic stress in this population differs from that associated with traditional trauma. The phenomenon of medical trauma in ICU survivors is complex: it is highly subjective, exists on a continuum, is cumulative in nature and carries cumulative effects, involves a combination of endogenous and exogenous, physical and emotional stressors that vary in intensity and duration, occurs in an interpersonal context that involves medical professionals, and takes place in a controlled setting with particular sensory and architectural features. This dissertation adopts an ecological perspective to explore the individual and contextual dimensions of this phenomenon and how these mutually and dynamically influence one other. A critical review of the literature examines multiple levels and variables of influence: individual (e.g., age, sex, race/ethnicity), clinical (e.g., sedation, mechanical ventilation, restraints), relational (e.g., nature and quality of interactions with staff) and environmental (e.g., lighting, noise, privacy) and includes a review of interventions initiated in the ICU that aim to mitigate medical trauma (e.g., ICU diaries, eye masks, sedation vacations). Results elucidate the nature of the relationship between and amongst variables and show that clinical features represent the most significant risk factors while empathic, patient-centered interventions and approaches to care can cushion the impact of stressors. Treatment implications for individual outpatient therapy include the importance of establishing safety, knowledge about the nature of this type of trauma, and the awareness of the unique intrusion and avoidance symptoms in this population. There are special considerations for applicability of the data to COVID-19. Establishment of a unified construct, psychoeducation for staff, families, and patients, interdisciplinary and collaborative ICU teams, and use of technology are practical applications indicated from the review. Future research is needed that includes examination of the impact of race/ethnicity, socioeconomic status, and social support, utilizes the Enduring Somatic Threat (Edmondson) and/or Medical Trauma (Hall & Hall) models, and explores the influence of personality and resilience features

Striving for a safe ground—A lifeworld approach of family members' experiences of the critical illness trajectory

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.Aims and Objectives: To explore the experiences of family members after they have lived through a close one's illness trajectory starting with critical illness and intensive care treatment, throughout hospitalisation and after their return home, and describe what was important and challenging for them during this time. Background: Being family during and after critical illness and intensive care treatment may be traumatic and challenging. An in-depth understanding of family members’ lifeworld throughout a close one's illness trajectory is needed. Design: A qualitative design with a phenomenological approach. Methods: We held ten interviews with eleven next of kin, nine of which were individual and one with a parent couple. The interviews lasted 90 minutes, on average, and were transcribed verbatim. Giorgi's phenomenological method guided the analysis. Results: The overall structure was ‘striving for a safe ground for themselves and their close one’, which was dependent on the three constituents of ‘in need of care’, ‘to take on responsibility’ and ‘to create new understanding’. Throughout the illness trajectory, the family members required care to increase their feelings of safety in the context of their close one being unsafe. They described taking on responsibility for their close one—a responsibility that increased after hospital discharge—as demanding new knowledge which they were often unable to obtain. Conclusions: Families of critically ill patients need to be seen on their own behalf. Moreover, when taking on responsibility for their close one, they regularly need more knowledge than they get. There seems to be an absence of a support system for families with caring responsibilities after their relatives are discharged from hospitals. Relevance to Clinical Practice: This study shows the importance of family carers being considered in their own right, as well as their individual needs throughout a close one's illness trajectory. There seems to be a gap in the knowledge of what family members require when their close one is discharged. Indeed, a better support system is essential for families following a hospital discharge.publishedVersio

How People Make Sense of their Partner’s Cognitive and Emotional Difficulties Following Acquired Brain Injury

The primary focus of the research is caregivers of people who have had an acquired brain injury (ABI); the literature review collated evidence in relation to caregiver resilience and the empirical paper focussed on partners in particular. Section one details the systematic literature review. It aimed to review all of the quantitative research exploring resilience and related constructs (RARCs: resiliency, posttraumatic growth [PTG], and hardiness) in caregivers of people with ABI. There was a particular emphasis on how authors defined their constructs, and the quantitative relationships of RARCs that were elucidated. Three databases were searched: CINAHL, MEDLINE and PsychINFO. Inclusion criteria were broad: papers must have used a measure for their RARC construct, and have used this to perform some type of statistical analysis. Twenty-six papers were included. Findings showed that resilience and resiliency were not narrowly defined, and often crossed over, or became confused with other RARCs. Generally, high RARCs scores were associated with good outcomes, and low RARCs scores were associated with poorer outcomes. Section two details the empirical paper, exploring people’s sense-making of their partner’s cognitive and emotional difficulties following ABI. Six working-age partners of people who had an ABI were interviewed and transcribed data was analysed using interpretive phenomenological analysis. Five themes were constructed: : (1) “I don’t know…it’s a weird thing to describe": The complicated nature of ABI; (2) “So you try and work around it”: The exhausting task of taking on the extra cognitive and emotional load; (3) “You’re not the partner anymore”: Finding a new relational dynamic; (4) “It’s like this ultimate patrol”: The need to protect; (5) The lack of effective support is isolating. Clinical implications were discussed. Section three appraises sections one and two critically, including further strengths, challenges, clinical implications and some of the author’s reflections through the process

Evaluation of a health and social care rehabilitation programme for survivors of critical illness and their families

Post-Intensive Care Syndrome (PICS) has been defined as new or worsening physical impairments, mental health problems, and/or cognitive dysfunction after a critical illness. PICS-Family (PICS-F) has been described as new or worsening mental health problems in the relatives and close friends of patients who have experienced intensive care. The Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme is a complex outpatient health and social care intervention designed to address the common problems that encompass PICS and PICS-F. The InS:PIRE intervention is delivered by a complex Multidisciplinary Team (MDT), with patients and caregivers treated together in groups through repeated visits, usually over five weeks. The intervention is designed for both patients and their caregivers and incorporates peer support throughout the programme. This thesis has taken advantage of an InS:PIRE ‘scaling-up’ project during which the programme was being expanded from the original single InS:PIRE site to a further five sites across Scotland. Before evaluating the effectiveness of InS:PIRE, a scoping review identified that there were no definitive treatments for PICS or PICS-F. Furthermore, there was a paucity of literature on the effects of complex outpatient interventions for critical illness survivors and their families. Having identified a gap, this thesis conducted three studies of the effectiveness and adaptability of the InS:PIRE intervention. The first study was a multicentre evaluation that compared the Health-Related Quality of Life (HRQoL) of 137 patient participants who attended the InS:PIRE programme (intervention cohort) with 115 patient participants who were treated in hospitals that had no intensive care follow-up service (usual care cohort). After covariate adjustment, HRQoL, measured using the EQ-5D Health Utility Score, was statistically significantly higher in the intervention cohort compared to the usual care cohort (0.12, 95% CI: 0.04 to 0.20, p=0.01) one year after hospital discharge. Self-efficacy was also significantly higher and there were 62% lower odds of screening positively for depression (odds ratio: 0.38, 95% CI: 0.19 to 0.76, p=0.01). There was no difference in the odds of anxiety. Overall, attendance at InS:PIRE appeared to be associated with better HRQoL and emotional outcomes for patients. The second study compared 81 caregiver participants who had attended the InS:PIRE programme (intervention cohort) with 89 caregivers recruited in parallel with the usual care cohort, as described above for the patient outcomes. After covariate adjustment, the intervention cohort had lower odds of screening positively for anxiety (odds ratio: 0.42, 95% CI: 0.20 to 0.89, p=0.02), caregiver strain (odds ratio: 0.39, 95% CI: 0.16 to 0.98, p=0.04), and clinically significant insomnia (odds ratio: 0.36, 95% CI: 0.17 to 0.77, p<0.01). There was no significant difference in the odds of depression between these cohorts. The intervention was therefore associated with a reduced burden on the caregiver from the problems relating to PICS-F. The final study assessed the implementation of the InS:PIRE intervention at a specialist Cardiothoracic Intensive Care Unit (CICU). This study did not have a usual care cohort and as such was conducted as a quality improvement project. Over the course of five cohorts, 27 patients and 23 caregivers participated in InS:PIRE. Over 90% of patients had problems in at least one HRQoL domain and 57% of caregivers had features of anxiety, while 35% had depression. The InS:PIRE programme adapted well to the needs of this specialist quaternary referral CICU. The intervention appeared feasible, with 96% of participants completing the programme. In conclusion, the InS:PIRE intervention appeared to identify and address unmet health and social care needs for this group of patients and their caregivers; it was well tolerated and appeared to offer significant utility for this population. This thesis describes in detail the literature relating to PICS, PICS-F, and specifically through a scoping review, outlines the outpatient interventions that have been described in the literature. Following on from this, the thesis documents the evolution and conduct of the InS:PIRE intervention and the framework under which the three studies were conducted. Finally, the detailed results of all three studies are described and the importance of this work to the literature is discussed

A qualitative investigation of perceptions of stress and coping strategies employed by caregivers of individuals with a traumatic brain injury in KwaZulu-Natal : a retrospective study.

Masters Degree. University of KwaZulu-Natal, Durban.Traumatic brain injuries (TBI) are a major health and socio-economic concern which negatively impacts communities worldwide (Maas, Stocchetti & Bullock 2008; Udoh & Adeyemo, 2013). Although most traumatic brain injury survivors recover completely, approximately 10-15 % may continue to experience physical, cognitive and emotional disturbances well beyond the expected recovery period (Mokhosi & Grieve, 2004). In South Africa, access to care facilities and rehabilitation is costly and limited. Thus, the patient’s family members are usually left to care for the patient at home (Webster, Taylor & Balchin, 2015). The process of adapting to the caregiver role as well as performing caregiver duties can be stressful for family members (Degeneffe, 2001). This is because the patient’s accident is usually unexpected and performing caregiver duties or rehabilitation activities may also be unfamiliar (Chronister, 2010). The aim of the present study was to investigate the experiences of caregivers of TBI patients to better understand which situations were perceived to be particularly stressful and which coping strategies were commonly adopted. Following a qualitative approach, semi-structured interviews were conducted with six participants. The findings of the present study were generally consistent with the findings of previous similar studies, with some unique contributions (Rawlins-Alderman, 2014; Verhaeghe, Defloor & Grypdonk 2005; Bond, Draeger, Mandleco & Donnelly, 2003; Minnes, Graffi, Nolte, Carlson & Harrick, 2000; Degeneffe, 2001). The caregiver stressors that were frequently reported included hospital experiences, sequelae of TBI, caregiver responsibilities, social networks, financial burden and limited resources. In attempt to better manage these stressors, the caregivers reportedly adopted both problem-focused and emotion-focused coping strategies. The outcomes of the current study may contribute towards positively supporting the caregiver experience and developing intervention programs that benefit both TBI survivors and their families in the future

Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU.

OBJECTIVE: To provide clinicians with evidence-based strategies to optimize the support of the family of critically ill patients in the ICU. METHODS: We used the Council of Medical Specialty Societies principles for the development of clinical guidelines as the framework for guideline development. We assembled an international multidisciplinary team of 29 members with expertise in guideline development, evidence analysis, and family-centered care to revise the 2007 Clinical Practice Guidelines for support of the family in the patient-centered ICU. We conducted a scoping review of qualitative research that explored family-centered care in the ICU. Thematic analyses were conducted to support Population, Intervention, Comparison, Outcome question development. Patients and families validated the importance of interventions and outcomes. We then conducted a systematic review using the Grading of Recommendations, Assessment, Development and Evaluations methodology to make recommendations for practice. Recommendations were subjected to electronic voting with pre-established voting thresholds. No industry funding was associated with the guideline development. RESULTS: The scoping review yielded 683 qualitative studies; 228 were used for thematic analysis and Population, Intervention, Comparison, Outcome question development. The systematic review search yielded 4,158 reports after deduplication and 76 additional studies were added from alerts and hand searches; 238 studies met inclusion criteria. We made 23 recommendations from moderate, low, and very low level of evidence on the topics of: communication with family members, family presence, family support, consultations and ICU team members, and operational and environmental issues. We provide recommendations for future research and work-tools to support translation of the recommendations into practice. CONCLUSIONS: These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care