Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure

Dinglas, Victor D.; Chessare, Caroline M.; Davis, Wesley E.; Parker, Ann M.; Friedman, Lisa Aronson; Colantuoni, Elizabeth; Bingham, Clifton O.; Turnbull, Alison E.; Needham, Dale M.

doi:10.1136/thoraxjnl-2017-210234

Cited by 59 publications

(37 citation statements)

References 45 publications

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“…44 This issue has been shown in previous studies, where patients and family members valued different outcomes when compared to researchers. 42 This study also gives new insights for future studies aiming to explore the differential response of patients with COPD to pulmonary rehabilitation. Although this qualitative study intended to inform the development of a core outcome set, future studies could focus on outcomes reported by these stakeholders that are seldom present in the literature, and yet highly meaningful not only to patients but also to their carers and health professionals.…”

Section: Discussionmentioning

confidence: 88%

“…2 Similar results have been found for acute respiratory failure, where multiple life dimensions were considered essential to be measured by key stakeholders. 42 Thus, this study adds value to a future core outcome set that has the potential to improve the quality of care to patients with COPD, by being meaningful and useful for research and clinical practice in pulmonary rehabilitation. This study has some limitations that need to be acknowledged.…”

Section: Discussionmentioning

confidence: 95%

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Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Souto-Miranda

Marques

2018

Clin Rehabil

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Section: Discussionmentioning

confidence: 88%

Section: Discussionmentioning

confidence: 95%

Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Souto-Miranda

Marques

2018

Clin Rehabil

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“…Understanding and information about critical illness within the family was important for the patient's recovery and for maintaining healthy family functioning. 22,23 Demonstrating the feelings that were exposed during the FamHC within the family improves the understanding of what each family member experiences during the ICU stay. The family members have concern for the critically ill and thoughts about how the roles and responsibilities within the family can change after returning home.…”

Section: Discussionmentioning

confidence: 99%

Family Health Conversations create awareness of family functioning

Ahlberg

Frisman

Berterö

et al. 2019

Nursing in Critical Care

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Background The whole family is affected if one family member is critically ill. The Family Health Conversation Intervention may give the family tools that support healthier family functioning. Aims and objectives The aim of this study was to identify which components of family function are affected when families participate in Family Health Conversations. Design A secondary analysis was performed of existing qualitative interviews. The Family Health Conversation is an intervention where nurses ask the family reflective questions, and reflection is made possible in three conversation sessions. Methods This study included transcribed data from 13 follow‐up interviews from seven families attending Family Health Conversations after three and 12 months. Data were analysed with narrative analysis, focusing on family function. Results Three themes were identified. The families' family functioning had been supported with: improved understanding of each other—there was an understanding of being in the same situation but still having totally different experiences; more concern for each other—they talked about their different experiences and felt they had become closer to each other; and a process of working through—they had experienced working through various experiences, standing by and supporting, and then being able to move on. Conclusions The Family Health Conversation Intervention is provided to families, accompanied by nurses. The families in this study gained an awareness of their family function that brought the family closer because of improved understanding of each other and the situation. The families experienced openness, and the family members spoke more freely with each other, which facilitated the progress of working through the experience of critical illness and helped to maintain healthy family functioning. Relevance to clinical practice It is important to have an overall perspective and to recognize the patient and the family as equally important within the family for awareness of family function.

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“…To address the issues of feasibility in ICU survivorship research, it is important to understand which minimum set of outcomes is most important for inclusion in all relevant research studies. Hence, we surveyed a national cohort of ARDS survivors ( n = 78) and family members ( n = 80), including 55 patient-family pairs, to empirically evaluate this issue [ 36 ▪▪ ].…”

Section: Patient and Family Perspectives On Patient Outcomes After Homentioning

confidence: 99%

Understanding patient-important outcomes after critical illness: a synthesis of recent qualitative, empirical, and consensus-related studies

Dinglas¹,

Faraone²,

Needham

2018

Current Opinion in Critical Care

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Purpose of reviewPatients surviving critical illness frequently experience long-lasting morbidities. Consequently, researchers and clinicians are increasingly focused on evaluating and improving survivors’ outcomes after hospital discharge. This review synthesizes recent research aimed at understanding the postdischarge outcomes that patients consider important (i.e., patient-important outcomes) for the purpose of advancing future clinical research in the field.Recent findingsAcross multiple types of studies, patients, family members, researchers, and clinicians have consistently endorsed physical function, cognition, and mental health as important outcomes to evaluate in future research. Aspects of social health, such as return to work and changes in interpersonal relationships, also were noted in some research publications. Informed by these recent studies, an international Delphi consensus process (including patient and caregiver representatives) recommended the following core set of outcomes for use in all studies evaluating acute respiratory failure survivors after hospital discharge: survival, physical function (including muscle/nerve function and pulmonary function), cognition, mental health, health-related quality of life, and pain. The Delphi panel also reached consensus on recommended measurement instruments for some of these core outcomes.SummaryRecent studies have made major advances in understanding patient-important outcomes to help guide future clinical research aimed at improving ICU survivors’ recovery.

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Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure

Cited by 59 publications

References 45 publications

Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Family Health Conversations create awareness of family functioning

Understanding patient-important outcomes after critical illness: a synthesis of recent qualitative, empirical, and consensus-related studies

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