Dataset Information

Patient and Caregiver-Derived Health Service Improvements for Better Critical Care Recovery.

ABSTRACT:

Objectives

To engage critical care end-users (survivors and caregivers) to describe their emotions and experiences across their recovery trajectory, and elicit their ideas and solutions for health service improvements to improve the ICU recovery experience.

Design

End-user engagement as part of a qualitative design using the Framework Analysis method.

Setting

The Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support groups).

Subjects

Patients and caregivers following critical illness and identified through the collaboratives.

Interventions

None.

Measurements and main results

Eighty-six interviews were conducted. The following themes were identified: 1) Emotions and experiences of patients-"Loss of former self; Experiences of disability and adaptation"; 2) Emotions and experiences of caregivers-"Emotional impacts, adopting new roles, and caregiver burden; Influence of gender roles; Adaptation, adjustment, recalibration"; and 3) Patient and caregiver-generated solutions to improve recovery across the arc of care-"Family-targeted education; Expectation management; Rehabilitation for patients and caregivers; Peer support groups; Reconnecting with ICU post-discharge; Access to community-based supports post-discharge; Psychological support; Education of issues of ICU survivorship for health professionals; Support across recovery trajectory." Themes were mapped to a previously published recovery framework (Timing It Right) that captures patient and caregiver experiences and their support needs across the phases of care from the event/diagnosis to adaptation post-discharge home.

Conclusions

Patients and caregivers reported a range of emotions and experiences across the recovery trajectory from ICU to home. Through end-user engagement strategies many potential solutions were identified that could be implemented by health services and tested to support the delivery of higher-quality care for ICU survivors and their caregivers that extend from tertiary to primary care settings.

SUBMITTER: Haines KJ

PROVIDER: S-EPMC9671858 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient and Caregiver-Derived Health Service Improvements for Better Critical Care Recovery.

Haines Kimberley J KJ Leggett Nina N Hibbert Elizabeth E Hall Tarli T Boehm Leanne M LM Bakhru Rita N RN Bastin Anthony J AJ Butcher Brad W BW Eaton Tammy L TL Harris Wendy W Hope Aluko A AA Jackson James J Johnson Annie A Kloos Janet A JA Korzick Karen A KA Mactavish Pamela P Meyer Joel J Montgomery-Yates Ashley A Quasim Tara T Slack Andrew A Wade Dorothy D Still Mary M Netzer Giora G Hopkins Ramona O RO Mikkelsen Mark E ME Iwashyna Theodore J TJ McPeake Joanne J Sevin Carla M CM

Critical care medicine 20221007 12

<h4>Objectives</h4>To engage critical care end-users (survivors and caregivers) to describe their emotions and experiences across their recovery trajectory, and elicit their ideas and solutions for health service improvements to improve the ICU recovery experience.<h4>Design</h4>End-user engagement as part of a qualitative design using the Framework Analysis method.<h4>Setting</h4>The Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support ...[more]

PMID: 36205494

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Project description:BackgroundIntensive Care Unit Recovery Clinics (ICU-RCs) were founded to address post-intensive care syndrome among ICU survivors. Telemedicine ICU-RCs may facilitate access for more ICU survivors, however, patient and caregiver experiences with telemedicine ICU-RCs have not been explored qualitatively.ObjectiveTo explore patient and informal caregiver experiences with a telemedicine ICU-RC.MethodsOur qualitative exploratory cross-sectional study was guided by qualitative description methodology. Telemedicine ICU-RC visits were conducted at 3- and 12-weeks post-discharge following critical illness. Patients, and caregivers when available, met with an ICU pharmacist, ICU physician, and a neuropsychologist via Zoom. Thereafter, we conducted qualitative (1:1) telephone interviews with 14 patients and 12 caregivers recruited purposefully. Data were analyzed using conventional content analysis.ResultsFive themes were identified: (1) general impressions of the intervention; (2) intervention organization and delivery; (3) intervention substance; (4) caregiver participation; and (5) ways to improve the intervention. Participants found the telemedicine delivery acceptable, convenient, time-saving, and conducive to thorough discussions. Participants appreciated the information, reassurance, and validation. Attention to mental health during the visits was strongly endorsed. Caregiver involvement depended on patient self-management and technical ability. Suggestions included scheduling a 1-week post-discharge visit, more follow-up visits, and individualizing content for in-depth discussions, including mental health evaluation.ConclusionsThe study results enhance the understanding of patient and caregiver experiences with a telemedicine ICU-RC. Participants' narratives helped to formulate recommendations to improve telemedicine ICU-RC delivery and content. Acceptability of this intervention indicates the potential for wider implementation of telemedicine ICU-RCs to reach more ICU survivors.

Project description:Introduction: The recovery approach aims to have users' perspectives at the heart of service development and research; it is a holistic perspective that considers social needs, personal growth and inclusion. In the last decade recovery-oriented research and practice has increased greatly, however, a comprehensive model of recovery considering exclusively the perspectives of people with lived experience has not been devised. Aims: This review aimed to develop a framework and contextualize service users' and informal caregivers' understanding of recovery from severe mental health problems. Methods: We systematically searched 6 databases including key terms related to knowledge, experience and narratives AND mental health AND personal recovery. The search was supplemented with reference sourcing through gray literature, reference tracking and expert consultation. Data analysis consisted of a qualitative meta-synthesis using constant comparative methods. Results: Sixty-two studies were analyzed. A pattern emerged regarding the recovery paradigms that the studies used to frame their findings. The resulting recovery framework included the domains Social recovery; Prosperity (Legal, political, and economic recovery); Individual Recovery; and Clinical Recovery Experience (SPICE). Service users' definitions of recovery tended to prioritize social aspects, particularly being accepted and connecting with others, while caregivers focused instead on clinical definitions of recovery such as symptom remission. Both groups emphasized individual aspects such as becoming self-sufficient and achieving personal goals, which was strongly linked with having economic means for independence. Conclusions: The recovery model provided by this review offers a template for further research in the field and a guide for policy and practice. Predominant definitions of recovery currently reflect understandings of mental health which focus on an individual perspective, while this review found an important emphasis on socio-political aspects. At the same time, only a small number of studies took place in low-income countries, focused on minoritized populations, or included caregivers' perspectives. These are important gaps in the literature that require further attention. Systematic Review Registration: The review protocol was registered on PROSPERO (CRD42017076450); https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=76450.

Project description:BackgroundFamily caregiver psychological distress during an older adult's critical care hospitalization can compromise their well-being and ability to function in a supportive role for patient recovery. Understanding factors influencing family caregiver distress and well-being during this period is crucial for developing approaches to support caregiver health. We sought to better understand and compare caregiver and care team member perspectives about factors and strategies that affect psychological distress and well-being among family caregivers during a critical care hospitalization.MethodsUsing a qualitative design, we conducted a directed content analysis of semi-structured interview data collected from 20 family caregivers of Veterans in critical care and 12 care team members at a US Veterans Affairs medical and surgical intensive care unit between October 2020 and July 2021. We examined factors related to caregiver psychological distress or well-being. The Consolidated Criteria for Reporting Qualitative Research guidelines were followed.ResultsFactors identified as related to caregiver psychological distress by caregivers and care team members included unfamiliarity with the health system, care team, and treatment processes; uncertainties about the illness and patient appearance; and responsibilities associated with the caregiver role. Factors related to caregiver well-being included proactive and personal communication, and a comfortable and respectful environment. Within these factors, however, there were differences in focus between caregivers and care teams. Caregivers focused on unfamiliar treatment processes, with unmet expectations around predictable communication. Few care team members indicated awareness of this concern. Other family, home, or caregiving responsibilities were described by caregivers as contributing to distress but were not mentioned by care team members. Caregivers discussed proactive communication by the care team that occurred either in-person or over the phone as emotionally supportive. Care team members emphasized in-person communication and videoconference options as beneficial and comforting to caregivers during visitor restrictions. The impact of a comfortable and respectful environment was recognized as promoting caregiver well-being by primarily non-clinical care team members.ConclusionsWe found parallels between the factors identified by caregivers and care teams related to caregiver psychological distress and well-being, yet often with differences in focus. These findings provide essential information for addressing factors contributing to distress and developing practices that support caregiver well-being.

Project description:BackgroundSince the onset of the COVID-19 pandemic, virtual care solutions have been rapidly adopted across the country to provide safe, quality care to diverse patient populations. The objective of this qualitative case study was to understand patient and caregiver experiences of virtual care to identify barriers and gather suggestions to address them.MethodsIn this patient-oriented project, we sought to understand gaps in virtual care experienced by patients and caregivers, using virtual focus groups. With the assistance of a patient research liaison, we engaged 2 patient partners as full partners; they participated in study conception, data collection, data analysis and knowledge translation. Recruitment was done through email by disseminating the study poster to 30 community organizations and health units in Ontario and British Columbia. We conducted a constructivist, qualitative study guided by grounded theory methodology. One researcher employed in-vivo coding, followed by axial coding with focus group participants, followed by selective coding with the study team. The study took place from November to December 2020.ResultsWe conducted 6 focus groups with 13 patients and 5 caregivers. The analysis resulted in 6 major themes and 17 minor themes. Key findings showed that barriers related to access to technology and Internet, language and cultural differences were challenges to virtual care. Participants identified special considerations surrounding caregiver and family involvement; privacy, consent and confidentiality; and the patient-physician relationship. Participants suggested that technology and the Internet be universally accessible and that virtual care modalities be integrated (e.g., consolidated patient portal) to improve virtual care.InterpretationThere are multiple patient-identified barriers to accessing virtual care in Canada; patients can provide insights into ways to address these barriers. Future research should include robust patient engagement to explore ways to address these challenges and barriers to ensure that virtual care can be equitable, accessible and safe for all users.Plain language summaryAlthough virtual care has been rapidly adopted and scaled up in health care institutions across the country, few improvements informed by patient and caregiver experiences have been made. Driven by concerns expressed by patient partners, our study team undertook a patient-partnered qualitative study to understand the barriers of virtual care from the perspectives and experiences of patients and caregivers. Our study team created the interview guide drawing from our previous patient-oriented qualitative studies and designed an orientation package to provide resources related to the focus groups and to introduce participants to the study team. Drawing from local health teams, clinics and patient advisory groups, the study team recruited 13 patients and 5 caregivers to participate in 6 focus group interviews. An analysis based on grounded theory was undertaken, with participation from both the study team and participants. Lack of access to technology or Internet and language barriers were determined to be the primary challenges in virtual care. Special considerations to caregiver and family involvement, privacy and confidentiality, as well as the patient-physician relationship were considered priorities to improving access to virtual care. Participants offered recommendations and potential solutions to address barriers and challenges in virtual care, which can serve to encourage large-scale policy and programmatic changes in patient-centred ways.

Dataset Information

Patient and Caregiver-Derived Health Service Improvements for Better Critical Care Recovery.

Objectives

Design

Setting

Subjects

Interventions

Measurements and main results

Conclusions

Publications

Patient and Caregiver-Derived Health Service Improvements for Better Critical Care Recovery.

Similar Datasets

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