Conceptualizing Transitional Care After Critical Illness Using Stakeholder Perspectives: A Qualitative Content Analysis

doi:10.21203/rs.3.rs-2493795/v1

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Research Article

Conceptualizing Transitional Care After Critical Illness Using Stakeholder Perspectives: A Qualitative Content Analysis

https://doi.org/10.21203/rs.3.rs-2493795/v1

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Background

Over half of critical illness survivors have new or worsened functional impairments. Yet, the United States lacks wide-scale transitional care infrastructure to promote wellbeing and prevent rehospitalization after critical illness. Evidence-based transitional care interventions urgently need to be adapted to address this gap. Thus, as a first step, we engaged diverse stakeholders to describe perspectives on transitional care delivery for critical illness survivors.

Methods

Qualitative content analysis of interviews with 11 critical illness survivors, 11 family caregivers, ten home health providers, nine primary care physicians and one primary care nurse practitioner; and focus groups with two home health teams, seven groups of inpatient providers and one group of administrators (total n = 69). Data collection took place in Western Pennsylvania between February 2020 and March 2022. We used pilot-tested interview guides to elicit perceived care needs, probing for barriers, facilitators, and social determinants of health. Five trained coders analyzed transcripts. We unified codes into themes and checked accuracy and completeness with participants.

Results

All stakeholders perceived that survivors’ unmet needs contributed to incomplete or unsatisfactory transitions. They identified barriers and facilitators of care that mapped easily to evidence-based transitional care intervention models. Social determinants of health were omnipresent factors in post-ICU care delivery. The data generated a hypothesis that strengths-based intervention models which target indicators of wellbeing (rather than deficit-based approaches managing symptoms) will improve outcomes among critical illness survivors. An additional hypothesis is that implementation strategies must design for health equity.

Conclusions

These findings suggest the need to adapt transitional care interventions to better foster wellbeing after critical illness. Six implementation strategies addressing administrative infrastructure and policy relevance (i.e. optimizing: incentives, record systems, quality monitoring, accountability, networking, and funding) could promote wide-scale dissemination of post-ICU transitional care delivery models.

post intensive care syndrome

functional outcomes

patient experience

qualitative analysis

transitional care

health equity

implementation

Over half of the millions of people who survive critical illness each year develop the Post-Intensive Care Syndrome (PICS) [1]. Defined in 2012, PICS includes physical, cognitive, and psychological impairments that evolve across the post-intensive care unit (ICU) trajectory [1]. Survivors experience significant social sequelae (e.g., inability to return to work, financial toxicity) [2, 3]. All this translates to complex life and healthcare system transitions for survivors and families [4]. Transitional care research has developed effective interventions responding to this duality in other contexts (e.g., functional and social changes in geriatrics). However, the United States lacks wide-scale transitional care infrastructure. This gap means people with PICS and their families frequently receive little help coping with life-changing illness or navigating complex, new problems.

Although studies of critical illness survivorship draw on the concept of transitions [5–10], none has evaluated evidence-based models of transitional care delivery. The rationale for doing so is strong. Transitional care interventions have: (1) included populations often treated in ICUs (e.g., heart failure) with complex functional impairments similar to PICS (e.g., cognitive dysfunction, frailty [11, 12]); (2) facilitated high-quality end-of-life care (1-year mortality among adult survivors is > 19% [13]); and (3) improved outcomes relevant to PICS (e.g., function, quality of life, costs) [11, 14]. Further, transitional care interventions promote access and scalability while addressing social determinants of health. This focus aligns well with the post-ICU community’s growing attention to health equity [15]. Finally, active ingredients of transitional care interventions address six common challenges among critical illness survivors: lack of patient and family engagement, inadequate patient and family education, communication problems, lack of collaboration among team members, poor continuity of care, and gaps in services between health care providers and across settings [5, 14, 16–18].

Integrating the post-ICU context into transitional care could also benefit the design and implementation of resilient health systems [19, 20]. PICS is common, not specific to any organ system or disease pathway, and treated by diverse providers in diverse healthcare organizations and geographies [17, 21]. Scaling transitional care for PICS would require a universal, complex adaptive system that seamlessly delivers generalizable components of care alongside those needing adaptation/tailoring to the post-ICU-context. This vision is feasible because transitional care interventions have retained effectiveness through complex adaptations (e.g., from Veterans Affairs to community systems, delivery by insurance carriers), and experts have argued that they are ready for widespread implementation and dissemination [22, 23].

As a first step towards conceptualizing evidence-based transitional care after critical illness, we conducted interviews and focus groups with diverse stakeholders across the post-ICU trajectory to describe their perspectives about survivors’ needs, and barriers and facilitators to addressing them. We analyzed these factors to understand their alignment with existing models of transitional care and, if well-aligned, identify adaptations that might facilitate successful intervention for people with PICS.

Participants and procedures

We conducted semi-structured interviews and focus groups in Western Pennsylvania. We focused on transitions from quaternary care hospitals to Health Services and Resources Administration-designated Shortage Areas (HRSA-SA) to promote generalizability across geographic and health systems barriers. We included but did not focus on COVID survivors and people attending post-ICU clinics to optimize generalizability across survivor groups. Similarly, we included but did not focus on clinicians with expertise in PICS to promote generalizability across specialty.

Four participant types were eligible for interviews: (1) survivors ≥ 50 years old who were living at home after ≥ 48 hours in an ICU; (2) family caregivers ≥ 21 years old and providing support for survivors; (3) primary care providers with ≥ two years’ experience caring for patients living in HRSA-SA; and (4) home health providers with ≥ two years’ experience caring for patients living in HRSA-SA. We conducted focus groups with three participant types who typically work in teams: (1) inpatient providers (intensivists, hospitalists, ICU and non-ICU hospital nurses, advance practice providers, pharmacists, rehabilitation specialists, social workers and care managers) in urban quaternary care hospitals; (2) healthcare administrators representing payers and providers in a large health system; and (3) home health teams in HRSA-SA. All spoke English.

Recruitment used purposive, convenience, and chain sampling via email, word-of-mouth, in-person meetings, and networking. We recruited professionals directly and approached survivors and families after treating clinicians obtained permission or via enrollment in a research registry. Although recruitment targeted survivor-family dyads, we responded to participant input to increase generalizability by including one survivor with two caregivers and one survivor with no available caregiver. Those agreeing to participate scheduled an interview or focus group at their convenience.

Interview and focus group guides used an evidence-based model of PICS to elicit perspectives on survivors’ needs and the barriers and facilitators to addressing them (Additional File 1). We piloted them with experts in rehabilitation, critical care, and palliative care. To support development of equitable intervention models, we inquired about social determinants of health.

Trained interviewers (LS – geriatrics and critical care) and psychology (EM - psychology) conducted one-time interviews and focus groups via telephone, videoconference, or in person, between February 2020 and March 2022. A family caregiver participated at the patient’s request during one interview; others were one-on-one. Digital recordings were professionally transcribed and de-identified. Participants provided informed consent per University of Pittsburgh Institutional Review Board Protocol 20110393. Data collection continued until no new themes emerged (i.e., thematic saturation) [24].

Analysis

Coders with backgrounds in psychology (EM) and medicine (PE, SPK, NG) conducted a qualitative content analysis [25, 26] in consultation with LS. Descriptive codes stayed close to the data to promote clinical relevance [25]. We compared and contrasted codes to clarify underlying concepts and organize them into themes, paying special attention to convergent (shared) and divergent (unshared) perspectives between survivors/caregivers, and providers. We reviewed results with providers to ensure clinical relevance and participants to ensure accurate interpretation (i.e., triangulation) [24]. Interrater reliability was excellent (Cohen’s kappa ≥ 0.87). We independently coded all transcripts, maintaining an audit trail and meeting after every five to resolve differences by consensus and discuss new patterns [24]. Codes were not mutually exclusive to avoid missing important ideas and relationships [24]. We used nVivo 12 (Burlington, MA, USA) for qualitative data management. We checked main results with participants and revised them to incorporate stakeholders’ perspectives (i.e., member checking).

After completing coding, we compared the codes and themes to a modified version of Schumacher and Meleis’ Conceptual Model of Transitions [27] (e-Figure 1), the foundation an evidence-based transitional care intervention model. Two of its domains describe transitions: (1) key elements of life that change — the person’s identity, roles and relationships, routines and habits, function, and environment; (2) contextual factors that impact the experience of change — the meaning the person attributes to the change, their expectations, knowledge and skills, environment, level of planning, and physical and emotional wellbeing. A third domain describes whether a transition is healthy based on personal wellbeing, relationship wellbeing, and mastery. We reasoned: (1) alignment between study data and the model would support generalizability to the post-ICU context; (2) nonalignment could generate hypotheses for future research. Similarly, we analyzed alignment of codes for barriers and facilitators with active ingredients of transitional care interventions.

Role of the funding source

The Agency for Healthcare Research and Quality sponsored the study but had no role in study design, data collection, analysis, interpretation, manuscript preparation, or decision to submit for publication.

Table 1 shows participant characteristics, roughly reflecting stakeholders in Western Pennsylvania. The analysis yielded three themes related to survivors’ needs and two themes related to barriers and facilitators of care. Sections below detail the themes and codes, and their alignment with the conceptual model of transitions or active ingredients of transitional care interventions.

Table 1

Participant characteristics
Characteristics	Survivors (n = 11) N (%) or mean (SD)	Family caregivers (n = 11) N (%) or mean (SD)	Healthcare providers and administrators (n = 89)^a N (%) or mean (SD)
Age - years	67.5 (11.1)	47.9 (17.6)	42.5 (11.5)
Female Sex	6 (54.4)	9 (81.9)	60 (71.4)
Self-identified Race People of Color White	4 (36.3) 7 (63.6)	3 (27.3) 8 (72.7)	3 (3.6) 80 (96.4)
Marital status, N(%) Single, Divorced or Separated Partnered	5 (45.5) 6 (54.5)	4 (36.4) 7 (63.6)	- -
≥ 4-year degree	3 (27.3)	5 (45.5)	79 (94.0%)
Insurance type Private only Medicare only Medicaid only Medicare + Private Medicare + Medicaid	2 (18.2) 5 (45.4) 1 (9.1) 2 (18.2) 1 (9.1)	- - - - -	- - - - -
Comorbidities Heart disease (MI or CHF) Cerebrovascular disease Peripheral vascular disease COPD Diabetes mellitus Moderate or severe CKD Malignancy (including leukemia) Substance use disorder Psychiatric illness	3 (27.3) 3 (27.3) 3 (27.3) 2 (18.2) 3 (27.3) 1 (9.1) 3 (27.3) 2 (18.2) 1 (9.1)	- - - - - - - - -	- - - - - - - - -
Reason for ICU Admission ARDS + septic shock Hypoxemic respiratory failure COVID-19 pneumonia ICH +/- seizures Endocarditis	4 (36.3) 2 (18.2) 1 (9.1) 3 (27.3) 1 (9.1)	- - - - -	- - - - -
Severity of ICU illness Received mechanical ventilation Received dialysis Experienced delirium	9 (81.8) 1 (9.1) 4 (36.4)	- - -	- - -
ICU LOS - days	15.4 (10.2)	-	-
Received PT or OT In ICU On floor	7 (63.6) 10 (90.9)	- -	- -
Post-ICU function ADL independence IADL independence	10 (90.9) 4 (36.3)	- -	- -
Employment status before critical illness Full time Part time Retired Other	2 (18.2) 3 (27.3) 5 (45.4) 1 (9.1)	- - - -	- - - -
Employment status after critical illness Full Time Part Time Retired Not seeking employment	2 (18.2) 1 (9.1) 6 (54.5) 1 (18.2)	- - - -	- - - -
Discharge disposition Home without home health Home with home health Acute inpatient rehabilitation Skilled nursing facility Long-term acute care hospital	1 (9.1) 3 (27.3) 3 (27.3) 3 (27.2) 1 (9.1)	- - - - -	- - - - -
Current housing Single-family house or mobile home Apartment	8 (72.7) 3 (27.3)	- -	- -
Caregiver relationship to survivor Spouse Partner Parent	- - -	2 (18.2) 1 (9.1) 8 (72.7)	- - -
Healthcare worker role Hospital-based Administrators Home Health (10 interviews + 2 focus groups) Primary Care	- - - -	- - - -	41 (46.1) 8(9.0) 30 (33.7) 10 (11.2)
Number of years in practice			13.0 (10.3)
ADL – Activities of Daily Living; ARDS – Acute Respiratory Distress Syndrome; CHF = Congestive Heart Failure; CKD – Chronic Kidney Disease; COPD – Chronic Obstructive Pulmonary Disease; IADL – Instrumental Activities of Daily Living; ICH – Intracranial hemorrhage; ICU – Intensive Care Unit; LOS – Length of Stay; MI – Myocardial infarction; OT – Occupational Therapy; PT = Physical Therapy
^a Demographic information unavailable for 5 missing surveys

Survivor needs

Survivors’ needs aggregated into three themes. Figures 1 and 2 illustrate the codes, themes, and alignment with the conceptual model of transitions. E-Tables 1–3 provide exemplars.

Theme 1: Critical illness survivors need to adapt to multidimensional changes. The following five subsections detail the codes comprising this theme. They align with the dimensions of life that change specified in the conceptual model of transitions (Fig. 1).

Personhood

Survivors needed recognition as a whole person, not just a patient. These needs arose around identity changes related to physical appearance (e.g., weight changes, scars, hair loss), a general sense of alienation from “normal,” and specific post-critical illness differences in ability to think and act in ways that they recognized as themselves.

Family caregiver, social/emotional support

Ability to fulfill usual roles in diverse activities (e.g., work, family support, household management, self-care, recreation) changed, and survivors needed to adapt accordingly. Relationships with family caregivers, friends, personal care assistants, and community organizations acquired new dimensions. Adaptations included figuring out whether and how to yield previous roles; accepting help — and navigating dependency; involving advocates; being accountable for practice and self-management; and maintaining personal connections when relationships developed clinical dimensions.

Independence/baseline & “normal”

Being independent at home and “getting back to baseline” were recurrent refrains. Functional independence was a floor for being at home generally supported by the system. Survivors sometimes recognized “getting back to baseline” would not be possible. Survivors, families, and providers often recognized that it was not supported by the system, relegating many to eking by without being able to re-establish predictable routines. Survivors and families had specific notions of whether their activities, roles, and routines were approaching “normal,” which included predictability, not needing extraordinary activation energy to accomplish previously easy tasks, and authenticity to self.

Mobility, mental health, cognition, safety

Functional needs revolved around mobility (e.g., strength, conditioning, ambulation, endurance, activity modification), mental health (e.g., depression, anxiety, trauma), cognition (e.g., memory, executive function, sensory impairment), and overall safety. While functional impairments often occurred earlier, loss of adaptative supports on transition home often caused disability to emerge.

In-home support

Many survivors experienced transitional environments before returning home (e.g., inpatient rehabilitation). COVID-19 mitigations/restrictions and the availability of in-home support altered decision-making about remaining in healthcare facilities. Most continued to need in-home support for instrumental activities of daily living after returning home, provided by family, personal care assistants, health care team members, or volunteers.

Theme 2: Critical illness survivors need a supportive environment in which to adapt. The six subsequent sections detail codes associated with this theme. They align with the contextual factors impacting change in the conceptual model of transitions (Fig. 1). Themes 1 and 2 support the conclusion that critical illness survivors are undergoing a life transition.

Meaning making

Survivors needed to make meaning out what had happened to them, often using strategies related to faith and spirituality, storytelling, and giving back to their communities through peer support and volunteering.

Focus on goals

Focusing on goals was a means to understand and set expectations, hold survivors accountable, and keep them motivated. Providers and administrators frequently discussed goal setting in the context of a poor prognosis for long-term survival; survivors and family members did not.

Education and training

Discussion focused on safe mobilization, use of medical and adaptive equipment, care coordination, managing medications, recognizing when symptoms need medical evaluation, identifying community resources, and addressing issues with insurance. Everyone agreed on the importance of involving family.

Accessible environment, recreation/stimulation

Survivors needed an environment that supported their impairments, typically through home modifications, adaptive equipment, adapted roles and routines (e.g., family took over the laundry to avoid steep steps), and transportation support. They struggled throughout to find recreation and stimulation that fit their interests and capabilities.

Anticipation of needs

Anticipating survivors’ needs was important, both to provide anticipatory guidance about expected challenges and to ensure timely, accurate, complete care coordination for everything from medication reconciliation to functional assessment to adaptive equipment.

Medical, nursing, nutritional, and rehabilitative care, symptom management

Changes in survivors’ physical and emotional wellbeing generated needs for medical, rehabilitation and nursing care (e.g., wound care, medication management, follow-up visits); physical, cognitive, and occupational therapy; nutritional support; and management of pain, fatigue, and other symptoms.

Theme 3: Stakeholders diverged about the goal/target outcomes of care. Stakeholders did not articulate a clear, unifying goal of care delivery. They generally agreed on a shared goal for survivors to safely achieve functional independence via community support and personalized goal setting (Fig. 2 depicts these goals vis-a-vis Maslow’s hierarchy, a well-established theory of human motivation [28, 29]). However, stakeholders diverged about the target outcomes of interventions to meet these needs; clinicians focused on clinical function often expressed in terms of activities of daily living or “back to baseline” (base of Maslow’s hierarchy) while survivors and families focused on adapting roles and routines and participation in meaningful activities (top of Maslow’s hierarchy). All gave a sense of dissatisfaction or incompleteness. None perceived care to accomplish the sense of mastery, personal wellbeing, and relationship wellbeing indicating a healthy transition in Schumacher and Meleis’ conceptual model.

Barriers and facilitators

Theme 4: Barriers and facilitators tend to occur as pairs; barriers are ubiquitous while facilitators tend to address specific barriers in a focused way. This section describes coded barriers according to the socioecological model (i.e., survivor, caregiver, healthcare organization and system, and societal levels). Figure 3 shows their alignment with active ingredients of transitional care interventions. E-Table 4 provides exemplars. The main takeaway is that the number and complexity of barriers is too much for survivors and families to navigate on their own; systemic, systematic support is necessary.

Survivor level

Comorbidities; medication issues including side effects and inaccurate medication reconciliation; knowledge gaps about the kinds of help, resources, and care plans they might need; and disengagement related to depression, lack of motivation, or low stamina were all barriers to addressing survivors’ needs.

Family caregiver level

Not having a family caregiver, or having an unavailable or disengaged caregiver, was a substantial barrier to meeting survivors’ needs. Sometimes caregivers’ priorities were misaligned with those of the survivor.

Health organization/system level

Inability to anticipate needs arose from inadequate provider understanding of PICS, what tasks survivors need help with, what resources are needed, and their availability in different care settings; survivors not asking for help; and rushed pace of discharge. This translated to lack of assessment, under-recognition of needs, and lack of anticipatory guidance. Providers’ attitudes, beliefs and behaviors became barriers when they were perceived as uncaring, uncollaborative, or undervaluing of services (e.g. home health). Lack of continuity from frequent staff turnover, site transitions, and numerous providers meant details were dropped and added burden for survivors and families. Communication was often absent, delayed, inefficient, inattentive to language and cultural barriers, or otherwise ineffective; electronic medical record (EMR) interoperability failed; or providers preferred different communication modalities (e.g., text, EMR, phone). Care coordination challenges involved struggling to include other teams, the survivor, and family in prioritizing, scheduling, referring, or planning. Finally, administrative barriers prevented access to services or supplies and placed time restrictions on providers’ ability to study the case, ask questions, and facilitate care planning.

Societal level

Social determinants of health dominated the societal level, especially: environmental factors (e.g., accessible housing, adaptive equipment); access (e.g., community resources, proximity to care, technology, transportation); cost (e.g., direct costs of travel, services, medicines, equipment and supplies; cost sharing among family members); and sociopolitical factors (e.g., insurance coverage, disability or sick leave, program eligibility requirements, broadband coverage, other policy support).

Theme 5: Social determinants of health are omnipresent factors in post-ICU care delivery. This theme emerged from patterns of divergence and convergence between survivors/families and providers (e-Figure 2). Survivors and families emphasized psychosocial needs and facilitators that providers did not discuss in depth. Survivors and families described personal experiences of barriers and facilitators; providers put them into an organizational and systems context. They perceived that even absent a biomedical “fix”, the system constrains humanistic support for survivors, families, and even colleagues. All agreed that social determinants of health were addressed piecemeal, could only be addressed by going above and beyond, or could not be addressed because resources did not exist or access barriers were too high.

To our knowledge, this study is the first to integrate perspectives of such a diverse group of stakeholders across the post-ICU care continuum. Their perception of the range of survivors’ biopsychosocial needs is consistent with current critical illness survivorship literature [2, 15]. The study’s main novel contribution is to show the power of a convergence science approach to post-ICU and transitional care research. Critical illness survivors need complex, adaptive systems infrastructure [20] that responds to their needs during a major life transition by enhancing communication, continuity, accountability, collaboration, and feedback loops to share values and strategies between providers and across settings. This is a model for responsive, resilient healthcare systems. Immediate attention should center on active ingredients of transitional care not consistently incorporated into the post-ICU context [6, 14, 16]. While implementation research is needed to demonstrate effectiveness at the population-level, this pathway could yield widely accessible, quality care for critical illness survivors many decades before de novo intervention development.

Our results also offer convergence science insights about how to adapt transitional care interventions to respond to critical illness survivors’ needs [30, 31]. Interventions using deficit-based models to manage symptoms have not consistently improved survivors’ mortality, function, or health-related quality of life [32–34]. Conceptualizing survivorship as a life transition – like graduation or retirement – suggests the relevance of strengths-based intervention models that seek an expansive notion of wellbeing beyond the absence of distress [28]. Such intervention models could include innovative mechanisms of action, mediators and moderators of impact, and outcomes. For example, Acceptance and Commitment Therapy (ACT) could offer survivors strategies to attend to their emotions mindfully and use this context to choose actions that reflect what matters to them [35]. Doing so aims to create a virtuous circle of increasing understanding, skill, and control (aspects of mastery and potential mediators), which may be easier for people with strong social support (potential moderator). Mastery could promote survivors’ agency over motivation, behavior, and social environment — likely improving outcomes like participation in meaningful activity [36]. Instead of aiming to “fix” individual deficits, this approach aims to enhance how survivors work with available personal, physical, and social resources to live fulfilling lives. It also offers opportunities for community-based interventions in partnership with psychologists, social workers, peer supports, art therapists, and spiritual care providers.

Finally, it should surprise no one that survivors and families need help to do complex transitional work; that systemic failure to meet these obligations hurts stakeholders across the post-ICU trajectory; and that these gaps exacerbate disparities among people with intersectional vulnerability (e.g., rural residence, lack of a family caregiver, limited financial resources) [37, 38]. Since scalable evidence-based transitional care interventions exist, the main question becomes: why haven’t we implemented them to ensure that people who survive expensive hospitalizations can access basic infrastructure that might reduce risk of inability to return to work (~ 50% lifetime[3]), functional impairment (> 50% at one year [2]), rehospitalization (> 40% at one year[39]), and death (> 19% at one year [13])? Implementation science offers strategies for translating evidence-based interventions into practice and making them sustainable [40]. Organizational/system and societal barriers in this study suggest implementation strategies should focus on healthcare administration and policy [41]. For example: (1) alter incentive structures (e.g., address root causes of disparities in mortality and readmissions regardless of diagnosis[42]); (2) change record systems (e.g., promote portable transitional care plans owned by patients and families [43]); (3) develop and implement systems for quality monitoring (e.g., feedback about transition quality between sites [17]); (4) obtain formal commitments (e.g., get health system leaders to set goals for intra- and inter-organizational transitional care quality); (5) promote “network weaving” (e.g., allocate resources for advocacy groups that share a vision for both health and social care [e.g., Alzheimer’s, HIV/AIDS [44, 45]) to collaboratively address emergent issues of intra- and inter-organizational transitional care quality; (6) access new funding (e.g., use successful “social safety net” policies for disabling health conditions like HIV/AIDS [44] as models for policies promoting equity after critical illness).

This study has limitations. First, the dataset was too large to represent in a single analysis. Stakeholders agreed the analysis represented their perspectives on issues with high potential health system impact. Second, while the range of stakeholders was the largest to date in post-ICU research, healthcare workers were overwhelmingly white, and perspectives of personal care assistants, long-term care and hospice workers were not included. We captured but did not probe issues critical to health equity (e.g., language and cultural barriers in communication and care coordination). Future research should center un- and under-represented voices and probe systemic barriers for which this study only provided headlines, especially not asking for help, or asking and not being heard. Non-clinician researchers could obtain insights stakeholders might not share with clinicians. Finally, these cross-sectional interviews identified salient needs, barriers, and facilitators for participating stakeholders. Longitudinal interviews could uncover additional information to facilitate healthy transitions.

The first “whole continuum” perspective on PICS care fits a conceptual model of transitional care, supporting adaptation of transitional care interventions to the post-ICU context. Adaptations should foster wellbeing beyond absence of distress among survivors. Ubiquitous organizational and societal barriers suggest the importance of innovating implementation strategies focused on administration and policy to make the system more responsive and resilient.

HRSA-SA – Health Services & Resources Administration-designated Shortage Areas

ICU – intensive care unit

PICS – Post-Intensive Care Syndrome

TCM – Transitional Care Model

Ethics approval and consent to participate: All methods were carried out in accordance with the Declaration of Helsinki. University of Pittsburgh Institutional Review Board (STUDY20110393) provided ethics approval. Survivors provided written informed consent to authorize data extraction from their medical records. All other participants provided oral informed consent.

Availability of data and materials: The datasets generated during the current study are not publicly available due to lack of funding to generate an archive. Corresponding author will facilitate collaboration or access to study materials including IRB protocol, informed consent form, study codebook and audit trail, and de-identified participant data to researchers with a methodologically sound research proposal through a Data Use Agreement upon request within five years of manuscript publication. Direct requests to [email protected].

Competing interests: None of the authors has any competing interests to disclose.

Consent to publish: Not applicable.

Funding: Dr. Scheunemann received funding from the Agency for Healthcare Research and Quality, grant number K08HS027210. Dr. Eaton acknowledges support from the VA Office of Academic Affiliations through the VA/National Clinician Scholars Program (NCSP) and the University of Michigan Medicine at University of Michigan. The authors' work was conducted independently of the funding body. No other company or agency provided financial or intellectual support for the work including design, data collection, analysis, interpretation, or manuscript preparation.

Author Contributions: LPS, TG, CFR, and NL conceived and designed the study. LPS acquired funding. LPS and EM conducted the investigation and administered the project. LPS, PE, PK, NG, and EM analyzed the data. All authors interpreted the results; LPS wrote the original draft of the manuscript. All authors reviewed and edited the manuscript for important intellectual content and approved the final version.

Acknowledgments: The authors would like to thank all of our stakeholders for participating in this research; the University of Pittsburgh’s Acute Lung Injury Registry, UPMC’s Critical Illness Recovery Center, UPMC Presbyterian’s previous Chief Nursing Offer Holly Lorenz and UPMC Home Healthcare’s President Paula Thomas for facilitating recruitment; Drs. Mary Naylor, Kathleen McCauley, and the University of Pennsylvania’s Transitional Care Model team for key feedback during study design, analysis, and interpretation; and Hali Felt, Executive Member of the Critical and Acute Illness Recovery Organization (CAIRO) for feedback during analysis and interpretation.

Needham DM, Davidson J, Cohen H, Hopkins RO, Weinert C, Wunsch H et al. Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders’ conference. Crit Care Med. 2012;40:502–9.
McPeake J, Sevin CM, Mikkelsen ME. Functional outcomes following critical illness: epidemiology, current management strategies and the future priorities. Curr Opin Crit Care. 2021;27:506–12.
Su H, Dreesmann NJ, Hough CL, Bridges E, Thompson HJ. Factors associated with employment outcome after critical illness: Systematic review, meta-analysis, and meta-regression. J Adv Nurs. 2021;77:653–63.
McPeake J, Boehm LM, Hibbert E, Bakhru RN, Bastin AJ, Butcher BW, et al. Key Components of ICU Recovery Programs. Crit Care Explor. 2020;2:e0088.
Haines KJ, Hibbert E, Leggett N, Boehm LM, Hall T, Bakhru RN, et al. Transitions of Care After Critical Illness - Challenges to Recovery and Adaptive Problem Solving∗. Crit Care Med. 2021;49:1923–31.
Johanna J op, ’t Hoog SA, Eskes AM, van Johanna MP, Pelgrim T, van der Hoeven H, Vermeulen H et al. The effects of intensive care unit-initiated transitional care interventions on elements of post-intensive care syndrome: A systematic review and meta-analysis. Australian Critical Care. 2022;35:309–20.
Kowalkowski M, Eaton T, McWilliams A, Tapp H, Rios A, Murphy S et al. Protocol for a two-arm pragmatic stepped-wedge hybrid effectiveness-implementation trial evaluating Engagement and Collaborative Management to Proactively Advance Sepsis Survivorship (ENCOMPASS).BMC Health Serv Res. 2021;21.
Stelfox HT, Lane D, Boyd JM, Taylor S, Perrier L, Straus S, et al. A scoping review of patient discharge from intensive care: Opportunities and tools to improve care. Chest. 2015;147:317–27.
Ghorbanzadeh K, Ebadi A, Hosseini MA, Madah S, Khankeh HR. Transition of patients from intensive care unit: A concept analysis. Int J Afr Nurs Sci. 2022;17:100498.
Häggström M, Bäckström B. Organizing safe transitions from intensive care.Nurs Res Pract. 2014;2014:Article ID 175314.
Pauly M, Hirschman KB, Hanlon AL, Huang L, Bowles H, Bradway C et al. Cost impact of the transitional care model for hospitalized cognitively impaired older adults. J Comp Eff Res. 2018;epub ahead:913–22.
Naylor M, Hirchman K, Hanlon A, Bowles K, Bradway C, McCauley K, et al. Comparison of evidence-based interventions on outcomes of hospitalized, cognitively impaired older adults. J Comp Eff Res. 2014;3:245–57.
Szakmany T, Walters AM, Pugh R, Battle C, Berridge DM, Lyons RA. Risk Factors for 1-Year Mortality and Hospital Utilization Patterns in Critical Care Survivors: A Retrospective, Observational, Population-Based Data Linkage Study. Crit Care Med. 2019;47:15–22.
Hirschman KB, Shaid E, McCauley K, Pauly M, v, Naylor MD. Continuity of Care: The Transitional Care Model. Online J Issues Nurs. 2015;20:1–15.
Jain S, Hauschildt K, Scheunemann LP. Social determinants of recovery. Curr Opin Crit Care. 2022;28:557–65.
Naylor M, Berlinger N. Transitional Care: A Priority for Health Care Organizational Ethics. Hastings Cent Rep. 2016;46:39–42.
Hauschildt KE, Hechtman RK, Prescott HC, Iwashyna TJ. Hospital Discharge Summaries Are Insufficient Following ICU Stays: A Qualitative Study. Crit Care Explor. 2022;4:e0715.
Admon AJ, Tipirneni R, Prescott HC. A framework for improving post-critical illness recovery through primary care. The Lancet Respiratory Medicine. 2019;7:562–4.
Wiig S, Fahlbruch B, editors. Exploring Resilience: A Scientific Journey from Practice to Theory. Cham, Switzerland: Springer Nature Switzerland AG; 2019.
O’Hara JK, Aase K, Waring J. Scaffolding our systems? Patients and families “reaching in” as a source of healthcare resilience. BMJ Qual Saf. 2019;28:3–6.
Kim RY, Murphy TE, Doyle M, Pulaski C, Singh M, Tsang S, et al. Factors Associated With Discharge Home Among Medical ICU Patients in an Early Mobilization Program. Crit Care Explor. 2019;1:e0060.
Naylor MD, Hirschman KB, Toles MP, Jarrín OF, Shaid E, Pauly M. Adaptations of the evidence-based Transitional Care Model in the U.S. Soc Sci Med. 2018;213:28–36.
Kind AJH, Brenny-Fitzpatrick M, Leahy-Gross K, Mirr J, Chapman E, Frey B, et al. Harnessing protocolized adaptation in dissemination: Successful implementation and sustainment of the veterans affairs coordinated-transitional care program in a non-veterans affairs hospital. J Am Geriatr Soc. 2016;64:409–16.
Morse JM. Critical analysis of strategies for determining rigor in qualitative inquiry. Qual Health Res. 2015;25:1212–22.
Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33:77–84.
Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15:398–405.
Schumacher KL, Meleis A. Transitions: A Central Concept in Nursing. Image: the Journal of Nursing Scholarship. 1994;26:119–27.
Kaufman SB. Transcend: The New Science of Self-Actualization. New York, New York: TarcherPerigree; 2020.
Maslow AH. A Theory of Human Motivation. Psychol Rev. 1943;50:370–96.
Dzau VJ, Balatbat CA. Reimagining population health as convergence science. The Lancet. 2018;392:367–8.
Eyre HA, Lavretsky H, Forbes M, Raji C, Small G, McGorry P, et al. Convergence Science Arrives: How Does It Relate to Psychiatry? Acad Psychiatry. 2017;41:91–9.
Lasiter S, Oles SK, Mundell J, London S, Khan B. Critical Care Follow-up Clinics: A Scoping Review of Interventions and Outcomes.Clinical Nurse Specialist. 2016;July/Augus:227–37.
Jensen JF, Thomsen T, Overgaard D, Bestle MH, Christensen D, Egerod I. Impact of follow-up consultations for ICU survivors on post-ICU syndrome: A systematic review and meta-analysis. Intensive Care Med. 2015;41:763–75.
Calvo-Ayala E, Khan BA, Farber MO, Wesley Ely E, Boustani MA. Interventions to improve the physical function of ICU survivors: A systematic review. Chest. 2013;144:1469–80.
Hayes SC, Levin ME, Plumb-Vilardaga J, Villatte JL, Pistorello J. Acceptance and Commitment Therapy and Contextual Behavioral Science: Examining the Progress of a Distinctive Model of Behavioral and Cognitive Therapy. Behav Ther. 2013;44:180–98.
Eakman A, Carlson M, Clark F. The meaningful activity participation assessment: A measure of engagement in personally valued activities. Int J Aging Hum Dev. 2010;70:299–317.
Metzl JM, Maybank A, de Maio F. Responding to the COVID-19 Pandemic: The Need for a Structurally Competent Health Care System. JAMA - Journal of the American Medical Association. 2020;324:231–2.
Agency for Healthcare Research and Quality. Designing and Delivering Whole-Person Transitional Care: The Hospital Guide to Reducing Medicaid Readmissions. 2016.
Hua M, Gong MN, Brady J, Wunsch H. Early and late unplanned rehospitalizations for survivors of critical illness. Crit Care Med. 2015;43:430–8.
Powell BJ, Waltz TJ, Chinman MJ, Damschroder LJ, Smith JL, Matthieu MM et al. A refined compilation of implementation strategies: Results from the Expert Recommendations for Implementing Change (ERIC) project.Implementation Science. 2015;10.
Martin CM. Complex adaptive systems approaches in health care—A slow but real emergence? J Eval Clin Pract. 2018;24:266–8.
Powell WR, Hansmann KJ, Carlson A, Kind AJH. Evaluating How Safety-Net Hospitals Are Identified: Systematic Review and Recommendations. Health Equity. 2022;6:298–306.
Donelan K, Chang Y, Matulewicz H, Warsett K, Heaphy D, Iezzoni LI. Care Plans, Care Teams, and Quality of Life for People with Disabilities. J Gen Intern Med. 2020;35:2274–80.
Watkins-Hayes C. Remaking a Life: How Women Living with HIV/AIDS Confront Inequality. Oakland, California: University of California Press; 2019.
Karlawish J. The Problem of Alzheimer’s: How Science, Culture, and Policits Turned a Rare Disease into a Crisis and What We Can Do About It. New York, NY: St. Martin’s Press; 2021.

No competing interests reported.

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Conceptualizing Transitional Care After Critical Illness Using Stakeholder Perspectives: A Qualitative Content Analysis

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Abstract

Figures

INTRODUCTION

METHODS

Participants and procedures

Analysis

RESULTS

Survivor needs

Personhood

Family caregiver, social/emotional support

Independence/baseline & “normal”

Mobility, mental health, cognition, safety

In-home support

Meaning making

Focus on goals

Education and training

Accessible environment, recreation/stimulation

Anticipation of needs

Medical, nursing, nutritional, and rehabilitative care, symptom management

Barriers and facilitators

Survivor level

Family caregiver level

Health organization/system level

Societal level

DISCUSSION

Conclusions

Abbreviations

Declarations

References

Additional Declarations

Supplementary Files

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